When Your Stomach Hates You - Living With Bile Reflux Disease
85Many people in general conversation will acknowledge GERD or Acid Reflux Disease. However, when I mention that I have Bile Reflux Disease, the eyebrows raise, and then a barrage of questions follow in pursuit of their curiosity to know exactly what this is. To me it is a physical nightmare plagued with pain, days off from work, loved ones looking at you with hopeless concern, and my favorite (and I mean this with complete sarcasm) a barrage of doctor visits mostly plagued at some point with the feeling the doctor doesn't believe you.
It is real, and for the most part is life altering. When my gastric doctor first told me I had it, I wasn't sure what it was. You see he told me I had it, but didn't really explain what it was. I had to go on my computer, look it up, and learn for myself. According to the Mayo Clinic it is caused when bile from your small intestine back flows into your stomach. This for me causes my stomach to go into violent spasms. Think of it like when we were kids and the neighborhood boys would have fun punching each other in the stomach. Everything we eat we tend not to pay attention to as we swallow. For the most part we notice we swallow, but after that we are already chewing the next bite. With Bile reflux, you feel every bite hit your stomach. The first time this happened to me, it scared my family to pieces because you double over with every bite you take. Hence, an emergency room visit shortly followed.
This condition happened to me because I had my gall badder removed years ago. I do not have my gall bladder to store digestive fluids from my liver. This does not happen to everyone who has had their gall bladder removed. There are many people I know who live perfectly happy lives without this tiny robin's egg blue organ. However, I do not get to be one of those people. You can also develop Bile Reflux Disease from having Gastric Bypass surgery or peptic ulcers. Therefore do not think that this condition is exclusive to people without gall bladders.
Symptoms of Bile Reflux Disease are very simple and short. However each one packs a powerful punch on your body.
1. Unintended Weight Loss : This is the most devastating one in my opinion. I am not a very big person to begin with. For me to drop 20 lbs. in nothing flat is not uncommon. This can be very dangerous for me, and weakens my body. It takes months to regain what I can before the next episode hits me. Then I have to do it all over again. It is a vicious cycle. If you are unfortunate to be a tiny person like me, you get many people calling you anorexic or bulimic. I am neither of those. It is a fight I have to monitor with a weight scale daily. Up means I am progressing and my medicines are working. If my weight starts to drop, my digestive fluids are attacking me and an episode will follow shortly.
2. Nausea: Everyone feels sick to their stomach at some point. However with Bile Reflux Disease, you are sick to your stomach all the time.
3. Vomiting Bile: If you do throw up, there is no content to it, just greenish yellow bile that burns. Unfortunately if you start throwing up, you can't stop, and your stomach is already in spasms.
4. Occasional coughing or Hoarseness
5. Frequent Heartburn: You feel it all over your stomach. It is a gnawing, burning sensation that does not go away. It is accompanied by inflammation of your stomach.
I found out I had Bile Reflux Disease by having an endoscopy performed. Which I would recommend to anyone experiencing the same symptoms. Your doctor will then prescribe medications to contain and lessen the symptoms. However, there is no cure. There is just management. Be prepared to have lots of blood work done on occasion as well. I was told they do this to monitor my digestive levels in my pancreas. If left untreated, the bile can cause ulcers in your stomach, it can lead to cancer in your stomach, pancreatitis, and so forth. If your doctor does diagnose you, I would also recommend applying for FMLA through the company you work for. This is because you will miss work from having episodes, doctor visits, and so forth.
Most of the time you don't really have anyone to talk to about this. The numbers are not high compared to people diagnosed with GERD. Their symptoms though similar, are not the same. There are support groups for people with GERD, but I have yet to run into another person suffering from Bile Reflux Disease. Though I have a great partner, who tries to understand what I am going through. It still isn't the same as speaking to someone else who is suffering the same things. I would love to start a support group. Just so people like myself can vent our feelings about this condition. It was depressing for me to sit in my doctor's office a year ago and be told that they can't fix this yet. That surgery usually is not successful. Life style changes are not very helpful either. Though changing certain things in your eating habits might lessen the symptoms, it does not cure them.
A good online reference to read about Bile Reflux Disease is located on the Mayo Clinic website.
Or you can go to : www.bilerefluxdisease-projecthope.webs.com/ where I can chat better with you.
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Thanks for your words of encouragement. To answer your question, Bile Reflux Disease is not an autoimmune disease. Think of it like this....your stomach is a sink, and the liver and intestines are the pipes. The Bile has no where to go if your pyloric valve is damaged so it backs up in your stomach causing all sorts of havic.
Oh wow, thanks for the clearer imagery. I don't think I'll take my digestive body parts and functions for granted any more, not now that I understand what could go wrong with them. I hope those studying BRD will come up with more substantial ways to assist you in living with this condition.
I know how it feels to have an incurable disease, but I can still eat without pain. I hope the same for you, someday. Hang in there!
Thanks for posting this hub! Very informative and helpful!
I am 31 years old & a couple of years ago I was diagnosed with BRD. I quit taking medication as directed after I felt better & I am now having problems again. It is a constant struggle & you never know from day to day how you are gonna feel. I also had my gallbladder taken out when I was 19. I completely understand what you are going through. I am in the process now of trying to get new treatment for this.
thanks so much for the post.
Jen, I understand you frustration. I am the only one I know of with this disease and it keeps me from living my life.. First I lost 49 lb from 159.. Now I have regained some, because my stomach tricks me to eat a lot to soothe the burning. I just had a Nissan Fundoplication operation that did not help.. So now I have to just manage as best I can. Without Prevacid I would be in unbelievable pain.
Thank you for posting and please keep in touch..
Hello Dragonlady, I'm also one that suffers from Bile Reflux. I had my gallbladder removed in Jan 09. I've been suffering ever since. I don't get much encouragement from the drs. I'm going to try the Questran to see if it will soak up any bile. I have constant burning, throat feels swollen. MAJOR depression. I"m also thin and have lost a lot of weight that I can't get back on.
If you ever need someone to talk to, let me know.
Liz
I was diagnosed with bile reflux disease at the end of March 2009. I started with the pain a year before and after switching to another gastro dr and doing another endoscopy it was diagnosed along with erosive gastritis. I am now on cytotec 200mcg twice a day to "toughen up my stomach". I have been on prilosec, reglan and carafate and they did not help. Side effects of reglan was terrible! The best thing is eating very small meals,avoiding fat, not laying down or sitting after eating, sleeping with a wedge and walking regularly. I'm hopeful for a medication that works that does not have bad side effects.
I have never had my gallbladder removed, I am 25, and I was diagnosed with bile reflux and gastritis about 3 years ago I think. I believe mine is due to a mixture of slow moving bowels (I think I was also diagnosed with gastroparesis?) and anxiety (which I believe increases bile production). The only med that worked for me so far is Reglan (Metoclopromide) but am scared to take it because of the risk of Tardive Dyskinesia, and it also makes me incredibly tired. I currently take Carafate (Sucralfate) to protect my stomach lining and help soak up the bile. However, I am going to ask my dr. about ursodeoxycholic acid?. Has anyone taken this drug before, and did it help? My main symptoms are stomach pain/burning and severe nausea. Thanks-
All your comments are very compelling. I would love to chat with any of you about what you are going through. Maybe we can help each other and not feel so alone with this condition.
I can relate to your pain and I've been trying anything natural that I can find as there is really nothing in the medical realm that helps. Reflexology has been helpful for my esophagus and gall bladder. Also, I read somewhere online that taking fish oil can help. I just started that today. I have had profound acid reflux pain that has been much relieved with nexium. The problem as we all know is that bile reflux cannot be so easily relieved.
I cant beleive reading your story as this has happened to me. I had my gallbladder removed in november 09 and been in terrible pain since, two months ago they found out i have been suffering from bile reflux which is a relief as i thought i was going crazy as i felt no one wld believe how much pain i am in, you cannot describe the pain to anyone i have never felt anything like it in my life! i am also a very petite person and has lost a stone in weight since my operation. reading your story was like reading about myself, i totally understand what you are going through, i am know on medication and there is an improvement i hope that things will get better now and i also wish you the very best also for the future!
My daughter, 15yo has been diagnosed with Bile Reflux & Gastrits. She has been in pain for a couple of months now. She had her gallbladder removed in 2/09 due to pain and had pancreatitis after due to complications from surgery. What meds are you taking? I'm trying to find out what is best for a 15yo.
I was diagnosed with Bile Reflux and Gastritis in July 09. The feeling is too bad and threatening. All I've been doing now is praying for God to do a miracle in my life. But the Lord Himself has also given as the herbs to be used to cure diseases. Does anyone know of any? Please help me.
Hi everyone....sorry I have been absent so long. I have been extremely sick with my BRD the last few months. This episode scared me because I became so weak with it, I wasn't recouping hardly at all. I am going to post a second article detailing what happened. Maybe something written will help some of you.
Hello, I just had a upper endoscopy done today and was diagnosed with BRD. Although, I am not totally familar with it, I am a little worried. Will BRD never go away? Also, I am only 15, and was searching the web to find more info on this disease and came to this website.
Hello! Well first off, reading your blog made me feel like i'm not the only one out there in the world feeling like this. I was diagnosed with bile reflux that turned into gastritis just 2 weeks ago. I had been suffering from it for a year and was becoming desperate and thinking it was all in my head.. i feel so much better just knowing that i'm not going crazy. my parents accused me of being anorexic and nobody was believing me. I'm only a teenager and can't imagine going the rest of my life like this. I really do hope they find a cure. I'm currently on a prescription called Cholestyramine it's supposedly used for reducing the amount of bile your liver produces. Anybody who's heard of this medication and if it's effective, please let me know. I really would like to start a group for people suffering from BRD.. it sure would help me and i'm sure it would help others too!
This feeling is too uncomfortable and hurting! It seems to be getting worse by the day. I've tried a couple of medications but it wouldn't work. Anyway, what I have realized is that, anxiety or stress increases bile production. Will someone please help me with ways of dealing with this anxiety in the midst of the pains???
Day in and day out, I pray for the Almighty Lord to heal my bile reflux and gastritis... it looks as if there's no medicinal cure... only God...
I was diagnosed with Bile Reflux in July 2009. My endoscopy results showed there was bile pool in my stomach. Two biopsies were taken from my duodonum and my stomach apiece, and a histopathological examination showed there was H.pylori colonization and chronic gatritis. My doc. only gave me domperidone for about six weeks and I felt no change in my symptoms. My major symptoms are, constant feeling of fullness, bloated tummy, burns in my upper abdomen, stomach upset, stomach noise and visiting the toilet quite frequently (feces is semi-solid; no diarrhoea).
Two and a half months later, i.e. in September, I was diagnosed with Major Depression after my girlfriend broke up with me. I saw the psychiatric and I was give paroxetine which did not work for me. It was changed to armitriptylin and that did not work out for me as well so I decided to use psychotherapy to treat my depression, which I'm doing quite well.
Prior to my being diagnosed with the bile reflux and the major depression, I had being under stress (resulting from a stressful relationship) for quite some time - about 7months, which probably threw me into some kind of anxiety.
Also, from what I've read from the internet, almost everyone with bile reflux has had it as a result of some gall bladder surgery. Now I have not had any surgery before, so I'm wondering what is the cause of my bile reflux. Could the H.pylori cause the bile reflux? Or it is related to my stress/depression? Some people are also trying to relate bile reflux to anxiety disorder? If it's the anxiety disorder/depression which caused this, how can I stop it? I don't know how to tackle this whole problem. Now the strange stuffs I'm reading about the bile reflux is even worsening my depression. I really need somebody to tell me how I can attack this bile reflux... Does it mean if I get anti-depressants to deal with the depression, the bile reflux will also stop? I was reading about some CCK antagonists stuff on the internet as well. The author is trying to link bile production with this CCK... I don't really know... Somebody please help me. I'm virtually seeing no doctor now, because they seem not to be in the position to help me - thank God for the internet - I'm really desperate and depressed.
Hi GradUS, it looks as if I have the same condition as you - bile reflux without any gall bladder removal. My major symptoms are bloating, feeling of fullness and constant burns in my stomach; it's one of the worst diseases one can be living with. My doctor put me on domperidone but I wasn't seeing any effect so I have decided to stop it. Please if anything works for you, let me know also and get it for myself. Thanks to you all.
My article is intended to educate, and refer to the ordeal I have endured while suffering from BRD. It is to share and maybe help someone else who is suffering from this miserable disease that for some reason boggles the medical community. It is not intended as written law...each sufferer must find a doctor that knows what they are doing, because without them the symptoms continue to worsen. Each patient must take it upon themselves to learn their symptoms, and educate themselves so they know what to tell the doctor. Because if they don't take control of the situation, the anxiety will grow worse from all the misprescribed medications and other things a sufferer will be ordered to do to feel better. I have learned 95% of my anxiety is from the medicines and doctors that weren't right for me. BRD is not a mental condition. No were in the symptoms has depression and anxiety been part of the criteria. Antidepressants are prescribed to ease the anxiety. Though that doesn't mean you need them. Find the cause of your anxiety and start learning to deal with it in constructive manners. I have decided to take control. I may have to live with this for the rest of my life, but it will not control me. The doctors will not control me, and I won't spend my life savings on needless procedures and medications, just because a bad doctor has a hunch. That's the reality of what we go through, and the condition does not go away. Each flare up I have new symptoms. This last flare up was the worst. This article was posted to help. To let people and myself know we are not alone, we are not crazy, that this condition is miserable, and we all need support in finding help. My path to feeling better may not be your path. That doesn't mean I am right or you are wrong. That's the wonderful thing about free thinking. Your opinion might help me, my opinion might help you. However, I will deny posts that leave negativity to another person or to myself the author. My ordeal has been horrific. I am sure yours is as well.
Thanks, Dragonlady for your post.
God's son just remember you are not alone. There is hope even in small things. It's bad enough what we and our bodies feel during a flare up. To feel all alone with this condition is the worst thing to add to it. I learned to always take a family member or trusted friend to the doctor with me. Why? because I can not count how many times I went to the doctor and felt completely alone after some of the looks they'd give me and CRAZY treatments. They are supposed to help me, not question me, and make me feel like I am making this all up. Thank goodness I did not give up on what I was experiencing. I would probably be dead from my feces poisoning my system. The trusted friend backed me up and helped me remember some of the things that the doctor would say, and I didn't feel so alone any longer. The greatest boost is knowing some one cares and is willing to stand by us, hold our hand, or just listen when we need it. That doesn't mean go out and find another girlfriend to make you feel better. Trust must be earned. Look to the circles you have in your life. Some one there, a long time friend, uncle, aunt, cousin, pastor, sister, brother, mom, or dad... someone in your circle believes you. Why? because you are loved by them and they hurt just as much seeing you hurt so much physically.
Dragon lady, you inspire so much and I don't even know what to say. Managing both depression and this BRD is a real tough challenge. The BRD worsens the depression, and when I think about going to live with it for the rest of my life (until may be a miracle happens), I get really sad. At times, I feel like giving up; especially when I get into my insomnia episodes. I think I'll have to take over too! Thanks for your inspiration and may God help us all.
Dear Dragonlady it's Karla again. I would like to know what medications were prescribed to you to ease the symptoms of BRD. I was given Cholestyramine and it's been a month and the medicine isn't doing anything thus far.
Karla, do you know what might have caused your bile reflux? Do you have your gall bladder removed? You may want to tackle it from the rout cause, instead of taking just meds to help. Try Carafate
Hi Karla I am glad you reposted. My current doctor looked at my prescription list and we did some weeding because it read over 20 different things. My course for the stomach has primarily been carafate, Nexium, Bentyl, Maalox, and now Zofran. The thing about medications, check very closely with your pharmacist which ones interact with each other. Carafate is good, but you can't take it with any other medications because it absorbs/blocks them. If you take carafate you have to wait 2 hours before you can take your other medications so you have to plan it's dosage out. GERD meds like Nexium help some with the gastritis, but aren't too effective for BRD sufferers. Bentyl really helps with the spasms your stomach and colon have, but can constipate you. Maalox is ok for immediate short lived relief, and I can't comment on Zofran because they just prescribed it. So far I don't like the affects and they will most likely stick me back on Phenegran for nausea. Lifestyle changes are a good thing, but won't do too much. However, I have axed fast food, and painfully given up coffee. I will have that cheeseburger now and again, and I am human and indulge in a very weak cup of coffee every once in awhile. My doctor made a very good point. Our bodies are like plumbing. If there is a clog in the drain, things back up. Therefore, I have been told to take a very mild laxative before bedtime on occassion. This helps if you are diagnosed with Irritable Bowel Syndrome (IBS) along with BRD. This did help with constipation and some cramping. You will need to discuss what is best for you with your doctor. If you don't like a medication, don't be afraid to tell your doctor you hate it, or it doesn't seem to be helping. I still feel cruddy even on my medications, so my regime might not be the best for you. As for the weight drop, you must make sure you eat, even with the nausea. Eggs are a good, mild thing to eat. I like them scrambled. Ramon noodles too. It is very hard to eat when you are experiencing nausea. However, I force myself to eat it. Even if just to keep my strength up. Anorexia and Bulemia are not symptoms of BRD. BUT, extreme nausea does make it difficult to eat. Set up a plan with someone you love and trust to help make a mild meal (even if small ones). Team work helps, and also relieves some stress as well. My boyfriend/fiance is my help. He makes it for me, and doesn't comment or condemn me for the amount I eat. Even if it's just a couple bites at every meal made that day. But, we do this religiously. I dropped 25 lbs since July. I am happy to say, I have gained all of it back. Some weeks it might have been only a pound or none, but I didn't give up and he didn't give up on me. Our worst enemy is feeling no one believes what we are feeling is real. MY god it is real, and our best stress relief is finding someone we love/like to talk to, believe us, support our good and bad days, and just be there. I hope some of this helps. I wrote a couple other hubs that might help you as well. Or at least give you some information to discuss with your doctor. Or help you feel a little better.
God's son, you are correct. Managing BRD is a challenge. I hate having this condition. I was angry and very depressed for a year when they told me there was no cure. Contributing factors in one's life doesn't help the situation. Breakups are the worst. Try being married for 20 years and suddenly "nasty" divorce. I can't count how many times I have woke up, and thought "This Bites!" I have decided nothing in this world is so bad that I can't make my life alittle happier. Even though I still have to live with this condition. So I am proud to say...find a hobby. You don't even have to be good at it. I paint badly. I sing in my car really loudly and most times off key. I decided to try and make a quilt....LOL what a mess. You know what? they may be badly made or orchestrated....but they are mine. You need to find some things that are yours. You'll be proud you did. Don't loose yourself in this condition. It's easy to do.
I had my gallbladder removed in November 07. I have been more or less sick with BRD ever since. I was diagnosed at Johns Hopkins in October 08 with GERD, gastritis and BRD via an endoscopy. The surgery also left me with cronic pain. Finally my heart rate is high, perhaps do to the vagus nerve being effected by my GI problems. Before the surgery I was extremely active, athletic and positive. Now, I am depressed, lathargic and not very active. Getting to work and back is a major accomplishment. My GI Doc from JH has me on domperidone, nexium and sweedish bitters plus ginger supplements. These help but do not keep me totally free from the nausea and pain. Lately I have been having stomach cramps and pain. I am going to an endocrinologist next week to see if my hormones are properly balanced. I never thoought having my GB out would be such a life changing event. Thank you DL for creating this page. Perhaps we can offer each other, as well as others, support.
Dragon Lady, never stop your inspiring posts; you are the only reason why I visit this very page. God bless you!
CHAWK.... I read your post and almost cried. It 's almost a mirror of my experience. I had my gall bladder removed in 2000. I never dreamed this would ever be happening to me as well. This week I had another flare up, and am still weak from it. I don't think people really understand just how much pain we go through. It is excruciating at times, or a constant dull ache that just won't go away. I can't stand the stomach and colon spasms. I feel like I am going into shock when this happens. It's my dream that we can all help each other on this hub (and my other hubs). I felt so alone for a long time with this condition. I want others to know they aren't alone. Thank you so much for posting... I look forward to hearing from you again.
God's son... thank you. I feel so miserable this week with the flare up I had. I really appreciate the kind words you posted. Cyber hug to you....
Big hug to you Dragonlady.... This week has been too bad for me too. The CONSTANT gnawing and burning is all over my stomach and it wouldn't stop. The burning is so severe and it's worse when I eat... my stomach really hates me. Any drugs to ease down these burning sensations???
Dear God's Son: No I haven't ever had my gallbladder removed. That's the strange thing I don't know what caused my BRD.
Dear Dragonlady: Thank you so much for your response. It has become so helpful for me both emotionally and mentally. My parent's thought I was going anorexic and never believed I was truly sick, they thought I was going crazy, until I got my diagnosis. You make me feel like i'm not the only person like this out there in the world and it truly helps me and I appreciate it so much.
God's son well, I have had to resort to my phenegran to ease the nausea and the bentyl to relax the spasms. Over the counter Maaloxx helps but is very very short term. Check with your pharmacist to see which Gerd type medicine might help you. They might say Prilosec OTC and Maaloxx will help until you see a doctor. Also check your stools during these episodes. If you are constipated a mild laxative might relieve some of the pain. Are you still not seeing a doctor? Irritable Bowel syndrome apparently loves BRD. It's making my life a living nightmare.
Karla, you are very welcome. We should never feel alone.
Talk with your doctor to see what is best for you to help you gain some of your weight and strength back. If you are like me the large weight drop leaves you feeling weak. My doctor told me a course that didn't seem too unrealistic to obtain. Your doctor might have some suggestions that will help you, not to mention a course of medicines that might help you manage your BRD.
I was wondering if I may have BRD?I had gb out in 2005 and have never been the same.I have constant symptoms that come and go whenever they want.I always tell people my stomach just doesnt like food!My symptoms are
Nausea(or kind of just feeling like you could throw up)
fullness
bloating(upper stomach)
needing to burp(but cant without tums)
really loud gurgling noises(upper stomach not intestines)
extreme weight loss(204 to 108 in 2yrs)
sometimes burning or warm feeling in stomach
Please if some one can tell me if this sounds like BRD.
I have at least one if not all of these symptoms everyday!I also developed anxiety issuse because of always feeling sick.
Thanks turtle184
Kelly, you should talk with your doctor about these symptoms. He/she may refer you to a gastrointestinal doctor to confirm a BRD diagnosis. Your symptoms sound like the possibility you have BRD. The sooner you see a doctor, the sooner they can put you on a treatment plan to manage BRD. I wish I could say there was a miracle cure, but there is not. Hopefully visiting this site, you won't feel so alone and anxious with this condition. Welcome
Hi again thanks for your response dragonlady.I have been to many drs in the past 3yrs this last time the gi dr told me I had gastritis,(while I was still half asleep in recovery after the endoscopy)but didnt say from what or really anything else,just go home take the carafate and watch your diet.My question is does everyone get a diagnosis the first time?Is BRD well known with drs yet?I mean all this time none of the drs Ive seen have really diagnosed me with anything.It was just lets try this med or maybe its anxiety or its in your head!Nice huh!I know its not in my head!I feel for everyone on here it really sucks to deal with all the time.Its changed me so much,and Im missing out on things with my daughter and husband cause of it.Its hard for most to understand but its nice theres people here who know whats it like!
Dragonlady, I was referred to see another doc. yesterday and after listening to all my symptoms, he basically gave me an anti-anxiety... imagine that!
Kelly, I am not sure about how much drs know. Sometimes it feels like they know very little, and then I get to be a pharmacutical guinea pig. I have discovered that both gastro drs, I went to seemed to diagnose it fairly quickly after my endoscopy's. I have fired many doctors over the course of this. I wrote about it in another article. Most of them were very quick to toss this off to a mental condition. I knew I wasn't crazy, but it was making me feel crazy. One even went so far as to tell me to drink carrot juice. (Imagine how infuriating that was) In the mean time, my body was poisoning itself with the back up of bile and feces. I guess the best advice, is to get tough with your doctors. I had too. I was tired of them prescribing anti-anxiety medications left and right. I was tired of them not helping me. I would call and ask your doctor what is causing the gastritis. Or ask to see your medical records. They are yours to look at any time you want, they are not doctor exclusive. You might have to do what I have had to do, and piece everything together from all the doctor's and then research it to help yourself.
God's son, I can imagine that. Unfortunately, an anti-anxiety medicine doesn't help the nightmare going on in the stomach. Are you getting any relief for that? If not you might need to find another doctor who will treat you for that.
Karla, is do you think you were so much stressed prior to you being diagnosed with BRD? If you were then it could be that yours is caused by stress and taking off the stress will definitely help. The bad thing about it is that, the BRD itself will make you more stressed out, so it's not that easy, but I think that is what you have to do to help yourself.
Dragonlady, I don't have any significant improvement, because I started taking it only three days ago but I have an appointment with him again on monday. The unfortunate thing is that, I am living in Ghana, West Africa, and I don't have access to most of the drugs that some of you guys are making mention of in this site. I've been looking for carafate, welchol and cholestyramine for instance for the past weeks and I cannot get it from anywhere around. That is another major disadvantage that I face. Now I'm reduced to only relaxation techniques; what else can I do?
God's son I had an interesting conversation with my doctor last week. I thought this might help you. I asked him why in all these years I keep hearing about Bile reducing medicines, but have never been prescribed them. He told me it's because they really don't help with BRD. Sort of ineffective like the surgery options. You face the same thing we do with medications. Though we in the states can obtain them easier, the effectiveness is the same... practically no relief. Also keep in mind that symptoms vary for each person. The basic criteria for BRD might be the same, but other things might be going on aggravating the persons symptoms i.e: allergies, or an infection, etc... So not only must you treat the BRD, you might have to treat your sinuses, or whatever is going on. If there were pictures in the dictionary for the word frustrating, I think it would be a picture of the stomach with the caption BRD next to it. Your meds (the anti anxiety) will take a little time to kick in, however, your doctor should have known this and given you something to relief the stomach and the pain. I would take a Maaloxx type medicine (liquid, not tums or rolaids) if you need immediate relief. That's what my pharmacist told me to do. No one should have to live like this. You'd think in the world we live in with all its technological advances, there would be a better, more concise treatment plan for us.
God's Son: Yes I am a student and become very stressed. My parents are the type that expect me to have perfect grades and if i don't, they get mad. And I don't like that so when I have exams and such, I worry so much and it's awful.
DragonLady: Your awesome.
I was diagnosed six weeks ago with bile reflux. I was told by the doctor that sometimes it just goes away. He told me to stay away from any fats. So far it is not helping. Every time I eat, I get burning pain in my upper stomach. This is from the bile, it is felt more on the top of the stomach. When this pain starts I mix one tbs of whole psyllium husks with a small amount of water (less than 1/4 cup) and drink it down with small sips of water. Drink quick or it will thicken. The psyllium husks absorbs the bile and takes it down. Relief can be felt in a couple of minutes. Psyllium husks work best, but when I am out, I bring dried toast in a bag. It also picks up the bile but not as well as the psyllium. Psyllium husks are also good for cleaning the bowels. Whole psyllium husks can be found at health food stores.
It was a blessing to find this group and to know that I am not alone! I am new to BRD-diagnosed in Sept 2009 following gallbladder surgery two weeks prior to the endoscopy. Had I known what was coming with the BRD I would have never had the surgery because I feel worse since the surgery. Last night was one of the worst episodes with excruciating pain, stomach spasms, severe bloating, and the burning is terrible. The pain was constant from midnight until 4 AM and no one knows how to help you. Still in pain today and missing another day of work. I don't know what to eat anymore the doctor prescribed Reglan (don't take it now), Nexium, and Welchol. I also take Zoloft that I was taking prior to the BRD thankfully. I have cried all morning because this is taking over my life and it is debilitating. I have not lost weight and at this time it does not hurt to eat. The pain feels like an elephant sitting on me and then a vise squeezing me until I can't breathe. I did learn from an episode where I passed out and was transported to the hospital via ambulance to breathe through the pain even if I use a paper bag which I used last night so I would not pass out from the pain. Sometimes I wish I would pass out and it be over when I wake up.
Dragonlady, I'm still taking my anti-anxiety but like I told you, I had another appointment with the doc. yesterday and he finally referred me to a psychiatric. These guys are just not helping me, and do you know what? It takes me about 5hours to drive to the hospital... the only thing I can do to help myself is to relax. But I have also discovered some drug, De-Nol (Bismuth Subsalicylate), which seems like gives me some slight relief with my burning sensation.
Karla, from the little I've read, our bodies, especially the digestive system reacts much more negatively to stress. I would like you to confirm from your doc. that your pyloric sphincter is not weak, because you are too young for that. If that is confirmed then I think, apart from the medication, the best thing to help treat this condition is relaxation. Try your best to get the stress off your head and I trust you'll get some good results. That is what I'm doing now
Micmic, just know that you are not alone. The burning and the bloating is just unbearable and nothing seems to alleviate it. Try to avoid spicy foods and that will help with the burning. Unfortunately, the doctors don't know much about this disease and it's so down-hearting. All the best
I've just been diagnosed with bile reflux and my doctor said it was caused by excessive stress and truly, I've been stressed out badly lately. Would somebody please answer me, will it stop if I'm able to get out of the stress? I also know very little about the disease. I would much appreciate your help. Thanks
Thanks God's Son for all the help! As well as to you Dragon Lady!
Lately I have been getting these intense headaches that are absolutely awful. They are often accompanied with dizziness. I don't think is part of BRD right? Should I go to a neurologist? The headaches are usually like a throbbing sensation. The type of headaches that when you're laying down and stand up and the back of your head is thudding.
Hi, wow I am laying in ahospital bed right now reading all these sad and terrifying comments. I had gastric bypass sugery about a month and a half ago, and have not been able to eat, or be comfortable since. I a. 46 yr. Old woman from Canada. Since the procedure I literally feel I being tortured every minute of every day. Every complication a person can experience from my surgery, I have! I had a complete blockage due to scarring of the intestines, this of course was excruiating, not being able to evacuate at all. I had to undergo a second surgery to correct this blockage , which has seemed t help. Now unfortunately I am experiencing
symtoms of bile reflux....all the symptoms, cannot eat, bloated upper stomach, gurgaling, cramping, and of course throwing up bile in large quantity. I have yet to be diagnoised, and mentioned it to my doc. During his morning rounds.... I will have to insist on an endoscopy soon . I also have great timming as the hospital is on skeleton staff due to Christmas, and my original surgeon is on vacation!
Thanks so much for the info, I am so glad I found this page it has been extremely benificial for me.
Stressed chap relieving the stress will help alot. However, Bile Reflux Disease is not a mental condition. So even if your doctor places you on anti-anxiety medications, they only relieve the stress (to a degree). The stomach problem is still there. Sadly, there is no cure (yet) for BRD. So managing it is the only way to get some relief.
Karla I have been getting excruiating headaches lately as well. Take a look at the medications you are taking. Some might not mix with each other. It's amazing how many anti-anxiety meds are out there and you should not mix a good portion of them with pain killers, etc... Start looking for your migraine cause.
MicMic you are not alone. I think I cried for a year after they diagnosed me. Carafate seems to be a half way decent stomach controller (since it coats the stomach and protects it). It won't stop a flare up though if it is going to happen. Nexium is ok, though it relieves Gerd symptoms. Gerd and BRD are two different monsters. Most Gerd medicines do not help BRD sufferers, except to relieve gatritis some. You'll need to find ways to destress yourself, because the medical community will add alot of it to you. I guess because they really aren't sure how to treat BRD sufferers yet. The key to feeling better is to know yourself. If you know that spicy meatball is bad for you, don't eat it. However, something as bland as oatmeal could trigger an episode as well. The frustrating thing is finding a balance to live with this condition. Stress is not criteria for BRD, but it adds alot of suffering to it. Get to know every medication the doctors prescribe for you. Some of them will not help, some will. For me, Bentyl has been a god send. It is a stomach and colon relaxer. It helps when the stomach spasms. Unfortunately it also causes constipation. It's ok if you are already taking Zoloft, but remember, Zoloft is only relieving your anxiety. It is not curing your BRD. I wish there was a cure. I understand how you feel about gaining BRD after gall bladder surgery. I had no choice with my gall bladder removal, it was going to burst. However, I really wish I didn't have to suffer with BRD as well.
3dogsplus your gastric bypass might have produced symptoms of BRD. They usually don't tend to diagnois BRD until an endoscopy is performed. Hopefully, the comments on here aren't terrifying you to the point of panic. I started this site so we could all help each other. The comments might be sad or terrifying, but they are real. We BRD sufferers suffer. My hope is that people will come here , gain knowledge, and find ways to help themselves deal with this condition. The reason I say that, is if I let my doctor take control 100%...I'd be bankrupt, and still misereable either from my BRD symptoms or the many needless medications they have prescribed in ill fated attempts to help me feel better (especially in the anti-anxiety department). Therefore, one must educate themselves on this condition, and not let it take control. Hopefully they will not diagnois you with BRD. You might be lucky, and the symptoms you are experiencing are unfortunate side affects of your Bypass surgery and will go away over time. Stay on top of things though. If things still don't feel right after a short while, you know your body, get help if needed.
I just found out today that I am suffering from bile reflux. I had been suffering through the pain fir almost a year. I at first thought I was going crazy. The doctor gave me different medicines for heartburn no of course worked. It seems that no matter what I do the pain is always there. I chew gum and get it. I wish that I did not have to go through feeling this way all the time.
Hi Kayla, welcome. I wish I didn't have to go through this either. Just know you are not alone.
Hey all , i'v been living with all this all my life cause with me its birth defect and it reached a very hard level so im facing a surgery after a month or 3 weeks and im so afraid , im 26 and i have Biliary Reflux in a very late stage and my doctor said i have to go through the surgery and only 2 doctors in the world have done same mine , one in Belgium and the other in Sweden and mine dr. attended one of them.
Welcome Ahmed, You can gain strength from the people around you who love you. They are your greatest support system. Even if you feel it is only 1 person. Hopefully your surgery will succeed to help relieve some of your symptoms since yours is caused from a birth defect. Never give up hope.
Hi y'all, it's been a while since I visited here. I've been battling with my last episode for some time now. But I'm kinda ok now, still managing though... Big hug to everybody!
Anyone tried the surgery or know of any one who has?
Welcome back God's son. Glad to hear you are feeling better.
Karla, Are you talking about the surgery that reroutes your bile into your colon?
Ya I am. My doctor told me that if the medicine he put me doesn't help I have to have suregery. I just wanted to know if it helped in at all.
Kayla, I have heard about the by-pass surgery but I have not heard of anyone who has had it before. I'm praying, it will be successful for you and so some of us can also suggest it to our doctors...
I was diagnosed with bile reflux after an endoscopy two weeks ago...I'm amazed to find this discussion, since I'd never heard of it before! I've been taking carafate 2X a day...but I feel worse...constant gnawing, burning pain...I'm also under a huge amount of stress, as a result of family issues....and there's no way out of that.
I'm afraid I'll suffer like this forever....help!
BarbaraB, I am taking carafate also and the symptoms seem worse after taking it. I have been on it for a month and tried giving it a chance. I am considering the surgery. I probably will call the doctor and see what he has to say. If it works I will let everyone know
Good luck Kayla and God be with you
Hi - I have been suffering with stomach pain since Labor Day Weekend 09. I live in Maine and traveled to Boston to the Beth Isreal Hospital. Last Friday, I had a scope done on my stomach and they found bile in it. Before this they had thought it was a trap nerve from previous surgeries I was already for surgery but thank God they found the bile. They give me the medicine named Prevalite Powder (Cholestyramine) - it has calmed the pain in my back which felt like I was being hit with a 2 by 4 across my middle back now I am in hopes for the left side pain that seems to pull on my bottom rib to clear - the doctors did recommend one month of meds. The medication is suppose to bind with the bile and keep in out of the stomach. Keep positive - I feel for each one of you and what you are going through I have experience my days of crying due to this issue. I had to leave work in early Dec 09 because of the pain and exhaustion. (I was also diagnosis with extremely low VitB12). Previously I had numerous test and two scopes in Maine with no luck but a diagnosis with Barrett Esg.
I nearly cried when reading these posts... for the first time, I think there are people that understand how I feel. I had my gall bladder out at 16 (I'm now 27). I was diagnosed with BRD two years ago - I also have IBS. I have been googling BRD off and on since then and I don't think the Mayo Clinic website even begins to capture how miserable BRD makes you feel. Overall, not a fun way to spend my 20s. Anyway, I am grateful, though sorry for all your suffering, to know that others are experiencing some of the same things I am. Last week, my doc put me on Welchol to help with the bile diarrhea, so I'm hopeful at least that this will help me function a little better in work situations.
ambermarieutk, I 2 am 27 and it sucks thinking about going through this forever. I can't wait 2 call the doctor in the morning 2 see when I can get in to see if and get this hopefully taken care of for good.
Wow, this sounds horrible! I never even knew this existed. best of luck to you. . .
I have been having some stomach problems. They started 2 years ago and have been coming and going. I get really nauseous when I have pain. When I throw up, it is a yellow bitter fluid. I think that's bile. Is it normal to have any bile in your stomach. I also have a lot of pain. The pain is really strong but crampy. It is located in my upper abdomen and in my back (kidney area). The pain is relieved when I through up. I have been reading about this bile reflex and am thinking this could be what I have. Dose anyone have similar symptoms? I need help cause my doctors have basically giving up on me. I can find some symptom info but not really spacific. If anyone has symptoms like mine, please let me know.
Amanda
Amanda, if you wanna know if it's bile reflux plaguing you, go and get an endoscopy done; that will be the only proof. Good luck
Does anyone suffer from dizziness or headaches with this BRD?
Newhere, some of the BRD drugs might make you dizzy so check out the drugs you are taking.
I was on Nexium for a year or so and blood pressure meds because with the pain my bloodpressure skyrocketed. I am still on the bloodpressure meds which on their own did not give me headaches , but I am now on Pantaloc since NOv. and have had dull migrane type headaches and dizzyness when I eat for the last few months . I have been diagnosed with Gastritis after my scope last month and yes I had my gallbladder removed a year and a half ago with no relief in my liver area. Still lots of pain there. I am glad I found this site . I have missed two weeks of work with this last episode . Had to have my blood pressure meds doubled and now am awaiting Blood sugar results. I was convinced I was diabetic.
Newhere, could you just google the drugs you are taking and see if dizziness is one of their side effects? Or may be ask your pharmacist/doctor...
I HAVE ALL THIS!! and im always in pain any everyone always yells at me for complaining!! but i only complain when it is just tooo unbearable!!! people dont understand what we are going through.. i always feel like there is a ball in my throat as well, thanks to the acid eating my esophogus..
Amanda, it's pain everyday for me as well but I've become used to it. You gotta learn to live with it and take your drugs, just know that you are not alone. People around you might not understand the way you feel but take comfort in the fact that there are other sufferers like me who can feel your pain, ok. Frankly, I'm only praying to God for a miracle and I think you should do same. I hope we all get better some day. But I'm sorry for what you are going through...
Yes I definitly pray abvout it! noone ever understands that I REALLY am feeling like crap all day!!! I try not to think about it. I actually own my own business that has products that helps my acid/bile, and healthy digestion. I take pure aloe juice, which helps my esophogus not feel so irritated, digestive enzymes with probitiocs which supports digestive health, and OPC 3 which is an antioxidant. I felt SSOOO much better after I took them for ONE DAY!!! but I had an episode this weekend, caused by the stomach virus which made my acid/bile go into overdrive or something.. Im sorry everyone is going through this that is on here! it is a terrible feeling in your stomach/throat all day long. It has made me lose weight (not complaining about that yet) but when i have no more love handles and thighs to take, its going to look really gross!!
my daughter was just told she had bile reflux and acid reflux we know what you are going through i have to set and watch my 15 year old go through this and she is out of school alot it took me 7 months for the dr. to finaly run the scope in her stomache to find out what was causing all the pain when she has epasodes i feel so bad because there is nothing i can do to help her we have seen sergions and dr. after dr. they treat you like you are crazy untill they find out the problem if you get this please email me @ kimberlystiltner@yahoo.com and please let me know how you are doing i hate that anyone has to go through this kind of pain but we are and i know how lost and awful it makes you feel i just wanna take the pain from my daughter but i cant it makes you feel useless and not worthy of anything to have to set and let your child be in this kind of pain
I had severe acid reflux to the point of regurgitating blood. I had the nissen fundoplication to tighten the sphinxter muscle. I was in heaven! NO HEARTBURN! Then one day I had a horrible pain in my right chest. I was taken to the emergency room thinkiing it was my heart they admitted me. After 3 days of testing they found a small stone in my gall bladder and insisted on doing surgery. I fought with myself over doing this but they kept insisting. So I agreed. Since the 90's my life has been hell from that decision. Every year another endoscopy to only have them say it's gastritis from bile reflux. They see the bile stains in my stomach. I'm offered carafate. Carafate has a very high aluminum content and they keep saying it's not going to hurt me. I do get relief from it but it's temporary. I've asked about ursodeoxycholic acid and they always so I don't need that because I no longer have a gall bladder but yet when I do research it keeps coming up as a treatment. When my stomach goes into major spasm during the night I have found the mix of donnatal/mylanta quickly settles the spasm. I keep that on hand and use only when needed. My endocrinologist has just offered me something new... WELCHOL It binds to the bile in the small intestine so there is less to get into your stomach. It is typically used with cholesterol lowering meds but he says this should really help with the bile reflux. None of this med is absorb by the body and is eliminated when you have a bm. I haven't filled this yet but I am excited about trying it. Right now I seem to be having a flare up with lots of pain and bowel irritation so I'm using the carafate to heal the inflamation in my stomach. Once the pain subsides I'll will start the welchol. For all of you suffering with this, just know there is someone out there who understands. The constant pain and nausea... just never feeling well is a horrible way to live. I never look forward to eating because I don't know if I am going to have an increase in pain and/or if it will set off my bowels and diarrhea will start. I don't enjoy going out anymore because of this. If I could take one day back in my life it would be the day I say yes to gall bladder surgery. No meds where tried to get rid of the one stone I had. I didn't have the knowledge I have now and it saddens me that at the time there was a medication available they could have tried to see if it would have eliminated the stone. I would like to pray right now for each of you as well as myself that God would heal any damage that happened to our pyloric valve as a result of our surgery and that the bile would do it's job in aiding in digestion. As long as there is God we have have hope. God bless you all and thanks for the posts.
I posted earlier about 5 months ago and I came across this website again. I am only 15 years old and my BRD is getting worse than earlier. I was wondering if the surgery works because I want to get cured from this horrible disease. Medicines I have took have not helped so far. This website is really great because it helps me feel like I am not alone.
wow!! i am soo sorry to hear about that! i like to come on here now and listen to everyone comments, and more and more each day im learning more, and what i have. i feel the same way you do about going out to eat, ive realized i need to eat bland things, or beef(steak)... thats always the easiest for me.. ive learned to get dressing.sauces on the sd because i have no appetite for some esp alfredo or garlic.. i actually gag at the smell of them.. i believe it sounds weirf but, my taste buds havent gotten better and i TASTE everything in EVERYTHING.. down to tarragon.. i cann not eat anything with that in it.. for some reason my stomach does not handle that spice very well.. I have been taking some great products that i am endorsing, because they have practically rid me of the feeling of not wanting to eat. i know i can eat now and be okay. If any of you are interested I would love to help you out as much as i can and give you as big as a discount as i can because i know what you are going thru. I was so excited when my cousin (who has stomach problems as well) got me intrigued about these amazing products that are all organic. please email me at manduh0703@hotmail.comfor questions.. thanks.. if you want i will email you if you just post your email on here for me..
I think i might actually have BRD and after an endoscope they found bile in my stomach but nothing else... i've already been on PPi's with really no help but the heartburn. I am miserable as well and this happened completely out of the blue for me... no stomach surgery, he didn't see any ulcers, etc... just got really sick one day and bam... it's been almost 7 weeks of hell with all these symptoms that you are all dealing with. Question for you... are all of you having trouble sleeping or waking up really early in the morning? Every morning i feel really jittery/shaky besides the constant gas moving in my system... but i'm waking like 3 or 4 in the morning.... just feeling terrible. It's so uncomfortable and i'm even gong to be at 9 just to counteract this. I'm only 27 turning 28... please help.
Any one try Welchol 620 Mg, with food, it works
Hi Dragonlady! where have you been? It's been a while, hope you are fine?
I'm sad to read all of this because I've just been diagnosed with BRD. I'm only 24 and my past has a lot of anxiety that I had been treating through cognitive behavior therapy to reduce stress. Once I found success with that I finally decided to have a child with my husband but things went really wrong. I had terrible morning sickness... pass what normal people would have. I could not eat and quickly lost weight. Sadly, I lost the child and while I was in the hospital I remember very clearly feeling so ill in my stomach and for the first time I threw up yellow stuff that just burned.
From then on thats all I could do. It's not always yellow but now i can only eat with pain and I went from a size 8 to a size 2 that almost falls off me. I'm tired all the time and well not much happiness to my life. I want more then nothing to be a mother it kills me but looking at the state of my body how could I ever get through it?
Hi all, my 9 year old daughter has been diagnosed with Acid Reflux, Bile Reflux and because she was still constinatly in pain they added on Abdominal Migraines. She is on Previcid & Zantac for the Acid Reflux, CArafate for the Bile Reflux and Amitriptoline for the Abdominal Migraines. all this and she still has bad belly pain, cramping, terrible bloating that always ends in Vomitting. We have made an appt. to go to Childrens Hospital in Boston for a second oppinion. Its worth the drive if they give us some insight into all this. If I find out any new news on Bile Reflux from them, I will definately come and post it here for all you to read. Good luck to you all, I know how painful and frustrating it is from watching my daughter struggle with this horrible condition.
- A loving Mom
Hi there, thank you for telling your story, it's gives me a relief and some kind of support in terms that I am not the only one suffered from this. Yes I'm the one experiencing the same problem 'Bile Reflux'. At first my GP told me it's acid reflux but after the endoscopy they found out I had bile reflux. After the endoscopy the doctor prescribed me with carafate, motilium and omeprazole. I'm still taking these medicines, its helps with the burning sensation in my upper abdomine but it had not stopped it completely yet. Sometimes I missed my evening doze intently because I thought its not working and im afraid it might cause other problems. My symptoms are: burning in the upper abdomine and winding alot from mouth. I never vomit bile and never experience any heart burn. Like you my gallbladder was removed last year. Thank you for your advice and support and I would like to be one of your follower. Please let me know on how to join. Thanks
sv2001302, I can relate to you! I have had stomach problems for about 3 years now, but just recently got an endoscopy because it hadn't gotten debilitating until recently. I think my problems may have been caused from taking NSAIDS for a year and a half or so for my neck problems, but I don't know. Anyway, in my endoscopy they found bile in my stomach as well as gastritis and esophagitis. They didn't say I have BRD but I am highly suspecting it. I wake up early like you. When I have my nausea attacks, I start waking up at about 3 or 4 in the morning and I'm really shaky. When I get out of bed, I feel so sick for a few hours before I feel like I can start nibbling on crackers or something. Typically its not until the next day that my stomach is back to my 'normal'. Along with those attacks, I often get sick after meals or if I go too long without eating.
Since my endoscopy, I have been put on omezaprole and carafate which have helped a little. I am now starting to try new diets and home remedies to see if I can find something to help my stomach. I am currently on a diet where I only eat really easy to digest foods, like white rice, cooked veggies, plain chicken, etc., and foods that are low in fat. I bought some multidopholus at the store today to see if that will also help. I am going to try this diet for a few weeks and see if I can get my stomach to heal to a point where I'm not so sick every day. I'll let you guys know if I find anything that works. I'm also looking at trying Coconut water and Mastic Gum.
By the way, I am also in my 20s (26). I know how you guys feel that are young too! I have been in bed for most of the last 3 years from neck problems and nausea. I always hate thinking that instead of enjoying these great years of my life, I am constantly suffering. I try to stay positive as much as I can, but its really difficult.
Wow glad I found this site. Like many of you, I felt alone. Even the doctors seem at a loss. I was diagnosed with acid reflux and then after the scope, gastritis. My symptoms are mainly nausea and vomiting in the mornings. This last week it has become somewhat debilitating that I have missed work for a week now. It is very difficult to eat and have lost 10 pounds, which is a lot for me, weighing only 122lbs. I have been on zantac, carafate, reglan, nexium, prilosec and now prevacid, which for one reason or another does not help me or only for short periods and I am back to where I started from...sick. This is very depressing and family helps but don't think they really understand. It sure is dragging everyone down. I have read online about extra virgin pine nut oil..so desperate..I'm thinking about trying it. I feel better as the day goes on, only dredding the mornings which starts this vicious cycle all over again. Staying positive, praying for a cure or least some relief from this nightmare.
I was so glad to find this blog while researching my newly diagnosed BRD. I was discharged from the hospital yesterday. EGD revealed my stomach lining was very inflammed and my stomach was filled with bile (no foods for 3 days prior). I am a Lupus patient (SLE) and had a history of gastric ulcers and erosions. They thought my two month LUQ pain was the ulcers worsening but lo and behold, the EGD showed no ulcers/erosion (old ones had healed)...just a lot of inflammation and bile. I also am two years post gall bladder removal. Putting the GI and Rheumatologist together on the phone they concluded the inflammation was due to the LUPUS, the bile from BRD which could be due to narcotic bowel syndrome. I'm now on a 14 day antibiotic that stays in the GI tract only and kills off all bacteria (good and bad unfortunately). I am switching to a pain patch so as to stop dumping narcotics via oral meds. They did biopsy but no results yet. I have some really neat pictures to show for all of this (said in sarcasm).
Thank you for writing your blog. It's been helpful to see that I am not alone and so many others go through what I am going through. While I'm glad my ulcers are gone, it's disheartening to know the Lupus is affecting organs. Bites!! I liked that phrased used above. Pretty much sums up my daily thoughts on it. Thanks again.
Let's have good hope in the Lord, He'll surely make a way... all the best to y'all.
Wow! I am so glad I ran across this page. I was diagnosed with BRD today after my EGD. My gallbladder was removed in 2005 and this started about 3 mos ago. I've never really had heartburn except during pregnancy. My stomach aches started coming and I went to the doc and he put me on Zegerid. I had an episode about a month ago and I literally thought I was dying. For hours I was in soo much pain. I finally went to the ER and they ran blood tests and didn't find anything, but I was still in severe pain and kept vomitting, and having nauseau, shivering and sweating at the same time. That same day I visited my regular Dr who did a cat scan and found nothing...so he continued to think it may be GERD or Ulcers. Last night it hit me suddenly, we had just gotten back from Memorial Day vacation and were going to drop off our 4 children and get some rest before the EGD this morning. About an hour before we left my stomach ache that I had all day worsened. I started feeling nauseous and a terrible pain persisted. I couldn't lay down, sit up, stand up...nothing...it was awful. We got in the car and about 5 minutes down the road and I just started vomitting, and couldn't stop. What a mess! My kids were freaked out, my husband worried, and I was still hurting so much. I took a Loritab after getting home and zegerid and that put me to sleep.
After finding this out today, its a bit scary. The doc took some biopsies and we will find out in a couple of weeks how they are. I just noticed the medication this doc prescribed me is Sucralfate. I just read the pharmacy directions and it keeps talking about ulcer relief..but I don't have ulcers. ?? I am also taking Omeprezole daily. Anyone taking these meds? I am not looking forward to this pain for the rest of my life. Its intolerable! I will do what I can do lessen the stress in my life. I have 4 kids and a daycare..so I have lot! I can limit fatty foods..no big deal, which is not a big deal...I need to lose some weight anyways. Any other suggestions?
Hi kc_pokermom, I have been suffering from BRD since 2006 and I must say that the only drugs that bring me some relief are 1 gram sucralfate pills (sucralfate in gel form was not so effective), taken before pain starts, and Maalox TC pills (without peppermint flavour, which is irritating for my stomach), when a bile reflux episode has already started. Sucralfate forms a coating on the stomach which protects the mucosa from acid, but also from bile. Its effect lasts a couple of hours. I take one before going to sleep (I sleep seated so that bile can flow away from my stomach) and one every time I wake up at night. Maalox binds bile salts in the stomach.
Omeoprazole has no effect on bile, but it stops the production of acid in the stomach. Acid is painful on wounds caused by bile.
Good luck.
I thank the good Lord for you all and that I found you. Your comments have encouraged my heart so much. I had not met anyone with BRD until today. My BRD started right after Christmas 2009 even with a good gall bladder. I was diagnosed in March 2010 and told that Nexium (PPIs) might make it worse which it did. I have been on Carafate for almost 8 weeks. This has helped but not totally resolved the problem as some of you have noted. I do have a few things ( about 7) that I have learned that might help some of you. 1. I AM USING FOOD COMBINING. You can google Food Combing charts and get a brief idea about what this involves but basically here is what I do: I eat meat with salads and carbs with salads but I do not eat meat with carbs. I eat fruit separately and never with meat or carbs. Combining the right foods reduces the work the stomach has to do to digest your food and involves the right enzymes. It is a challenge to take the Carafate which must be taken 1 hour before meals (30 minutes before the meal works when necessary) or 2 hours after meals. 2. Raw almonds eaten alone are a great snack and amazingly do not hurt my stomach. I keep raw almonds with me so that when I get hungry before I get a meal I do not leave my stomach empty. 3. I have also found that Silk Almond Milk (original flavor) or Silk Soy Milk (original) help more than drinking cow's milk. I also like goat's milk sometimes at night (if I get hungry) since I do not eat food within 3 hours of going to bed. 4. I take DGL (licorice) and sometimes Aloe Vera Juice. 5. I take Stomach Comfort (Natures Sunshine) for burning instead of antacids. According to the web, Deer Park water is more alkaline so I keep that in the car and at work in order to drink half my weight in oz. each day. 6. I take food enzymes without peppermint with each meal along with other supplements. 7. I also elevate my head at least 8 inches when I sleep. Take a look at the No Pain, Great Taste website. It gives some helpful suggestions and you do not have to buy anything. Be sure and chew your food good. Go to the Library and and check out the books: Gut Wisdom and Gut Solutions which also have good insights on gastritis. I have good days and bad days but I have been encouraged that "His strength is made perfect in my weakness." Blessings to all of you on this journey.
Thank you Dragonlady for bringing us all together. Here are few additional insights others have alluded to: 1. If you do not get much exercise then try to walk at least 8400 to 10,000 steps per day (using a pedometer). 2. Eat whole foods, healthy unprocessed foods like raw veggies and salads with a little olive oil and raw honey (but do not add garlic, raw onions or fruit). 3. Try making your own 100% whole wheat bread (in a bread maker) or buy Ezekiel Bread. 4. Refrain from or reduce consumption of white sugar and white flour (I had IBS for years until I increased my fiber and water intake and cut out the highly refined stuff). 6. Refrain from any can drinks or sodas even diet. Instead, try real fruit smoothies (frozen fruit is an option) using a little water and raw honey as a stand alone breakfast meal every hour until three hours before lunch. 7. If you eat out, try a salad and add grilled chicken and leave off the croutons (if you add the meat).
The medical profession has made great strides to advance medical care through the years but they cannot know everything. That is why they call it practicing medicine. With your Doctors help, get off all the medications you can and go with the most natural options possible. I take only Carafate four times per day and I hope someday to stop this one. In His grip. Keep looking up.
Hello,
I am still struggling with BRD. What would be a reasonable of time in between endoscopies. I had one about 6 months ago that showed nothing. How is this possible? The one 6 months before show bile gastritis. I still feel the same if not worse. The depression and anxiety are now getting bad from the constant pain. And I'm going through a very stressful time that I can't get out of. I keep thinking the amount of pain and burning I have means I've got something terrrible wrong :(
Don't give up. If you have not tried food combining you might find it helpful. A spinach salad and baked potato would be easier to digest than meat and potato. There have been times when I blended or pureed my food just to keep it from hurting my stomach as much. Chamomile tea has also been soothing on my stomach. Keep eating small meals. If you are on the Proton Pump Inhibitors like Nexium, they can make bile gastritis worse. If your Doctor does not seem to be able to figure out what you need, you may want to get a second opinion. Check out the books Gut Wisdom and also Gut Solutions. I found the first one in the public library. Have you tried Carafate? There maybe some discomfort with Carafate but it has given me some relief. Listen to your gut. See what works for you. I would leave off caffeine and colas. Stay away from refined and processed foods. Raw or lightly steamed veggies would be better for you. Keep a record of what foods work well and what foods do not. Google "Food Combing chart" and just try and see if it helps. You can survive this. Keep on keeping on.
Hi again. Since I last posted, I had my gallbladder removed. As most of you here, it didn't help. I am still sick. Now I am going to see a new GI for another opinion. My symptoms are mainly nausea and vomiting bile only in the mornings. But it is anyone's guess if the morning brings me a short stint of throwing up or an all day of hell. I do not suffer any pain just the vomiting. I am also like dragonlady, a very small person who really cannot afford to lose weight. I started this at 123 and now I'm down to 105. The new GI dr I'm going to see, is a 2 month wait! I have not been diagnosed with BRD but after reading here, I think I fit the profile except for no pain which is not uncommon for me because I never had any pain with the gallbladder either. Well today I am still hoping for some relief but a cure for all would be nice. This disease is very depressing, but I'm hanging in there. Hope and prayers for all of you. I will write back once I see the new GI.
This sounds like what I go through, but still have not been to a doctor. In the mornings before I go to swim practice I try to eat something, but my stomach hurts so bad that I can't swallow anything and then when I get to practice I throw up bile. I went to the doctor a year back and was told that I could go to get something like that endoscopy you talked about, but I never went. I'm only 15 years old and this is taking everything out of me. my parents keep telling me it's all in my head, but I know its not. Would getting your gallbladder removed maybe solve this problem or not?
Hi Hannah
No it is not in your head, no matter what anyone tells you. I think people say this when they are at a loss on how to help you. You probably should get an endoscope done. I had one a year ago and was told I have gastritis but did not give the cause of my gastritis, so now I'm going back to see another GI doc to see if they can tell me why. I had my gallbladder removed because it had gallstones, inflamed and partially blocked but this did not relieve my problem but I was told it added to what ever is causing me to be sick. GI docs are hard to get into see, mine is a 2 month wait. Unlike you and others here, my stomach never hurts, I just feel sick and then throw up. Sometimes the episodes are short and I feel good and then I have some where I throw up for hours and end up in the emergency room. I'm on zantac right now and they prescribed me zofran for nausea and vomiting which I only take if I feel I can't keep it under control. I went to the doctor the other day and he said that my indirect bilirubin is slightly elevated but could not tell me why. Now I wonder if this is another clue or another problem. And on it goes. Good luck Hannah.
Wow! I'm tearing up while reading these posts. My thoughts and prayers go out to all of you.
I was diagnosed with an ulcer in my esophagus and had to see different doctors who prescribed me various medications that didn't work. Even with something as simple as an ulcer in the esophagus it seemed as if doctors really don't know how to fix these problems. One doctor actually completely blew me off when the medication he prescribed me quit working. He started to act like I was trying to create a problem or something.
Once I went on a raw foods diet and began taking enzyme vitamins and drank cabbage juice 4 times a day, I was able to quit taking all the pills that the doctors prescribed me.
I hope the best for all of you and hope someday doctors will find the answers that all of you are searching for.
Im so glad ive seen this sight, i had my gallbladder removed a year ago and have had nothing but trouble since! feeling sick all the time always in pain and no energy. Always in and out off hospital and still no answers then the doctor arranged a gastroscopy.Ive been diagnosised with bile reflux at least now i know theres been some thing wrong all this time! Wish i never had my gallbladder removed.
I have just been diagnosed with having bile reflux after having an endoscopy, i have never had my gall bladder removed.
I am in complete agony gagging and feeling sick all day.
Especially wheni eat something i am on medication but i know its early days but fed up already
I just came home after an endoscopy, happy just to have a diagnosis.
I'm lucky in a way because it's been just a week since I developed symptoms and my GP got me in to see the GI doctor yesterday and she did the endoscopy today. (I'm diabetic and can not afford to be vomiting).
Like so many of you, I had my gallbladder out in 2007 after an attack of pancreatitis/gall stones. Worst mistake of my life! I've had chronic diarrhea ever since.
Last Wednesday, I woke up in the middle of the night feeling like I had a knife in my back and that someone had kicked me in the ribs- the same symptoms as pancreatitis. The vomiting began the minute I sipped water.
A trip to ER and some lovely drugs helped but the CT scan, x-rays, blood work and ultra sound showed nothing but a minor kidney infection. After 6 days of vomiting and dangerously low glucose levels, I was diagnosed today with BRD.
I want my gall bladder back! I'm starting on Carafate tonight. I have tried Welchol and Cholestryamine to soak up excess bile with varying degrees of success- sometimes they work; sometimes they don't.
My GI doctor has given me some encouragement. After 30 days on Carafate, she will discuss the newest treatments. Thank you all for being willing to share your symptoms and the reactions of people around you- including some very lousy doctors! I now know what I can expect from so many people.
I think this is going to be challenge.
I have coined a new term to describe BRD - Gutastrophe. There is hope and so do not give up. I gained 2.5 pounds over the last two week so I am celebrating this small victory. I am off the Carafate and all medication and so glad. It seemed to help me through the gastritis but I could never gain any weight. I had lost 11 pounds since December down to around 144 and I am 6' 2". My wife says I look like a POW. Can you identify?
I am thankful for Chamomile Tea anytime, DGL (licorice) between meals, Slippery Elm, Marshmallow (Althea officianalis) in liquid form and Glutamine powder (one teaspoon full with Rice Bran Oil as you begin breakfast and supper). Be sure and take some probiotics 6 -10 million one or two times per day. I also like Robb's Strawberry Whey powder mixed with Rice Dream (original) or Silk Almond milk (original).
Your life has changed drastically already because of this challenge. Take the plunge and start eating healthy foods that are unprocessed and unrefined. We did not get this way over night and it will probably not improve overnight but take small steps and celebrate each victory. It took seven months for me to get to the point where I even wanted to encourage someone else to hang on. Keep looking up.
Woody,
I'm not sure what to think. After feeling incredibly ill for almost 10 days, I'm quite fine now. I have no pain, no nausea, and food is staying down..
Tomorrow I'm going to make a follow-up appointment with my GI doctor. I'll continue with the carafate unless she indicates otherwise.
I know so many people say that this is a reoccurring condition- the sword of Damocles just waiting to ruin your day. With optimism bordering on lunacy, I'm hoping that it was just a single episode.
I'm sure some of you are shaking your heads and thinking that I'll soon understand. But for the moment, I need to feel positive about this. Like Scarlett O'Hara, I'll think about this tomorrow.
Cat,
I am happy you have been doing better. Have you seen your GI doctor yet?
I tried sleeping with a pillow wedge (adding just one pillow on top of the wedge) for the last two nights. Amazingly it was the best two nights of sleep I have had in a many months and my wife is rejoicing because I did not snore. : ) Mine is 23Wx7¾Dx25"L; tapers to ½" thick.
Keep looking up!
Woody,
My follow up with the GI doctor is August 5th. Her PA called last week to advise me that the biopsies showed my stomach to be just a bit inflamed but my duodenum has gastritis. Didn't know you could get that there. But then again, I didn't know you could get bile in your stomach.
In the last week, I only had one small bout of nausea with some burning in my throat. The rest of the time, I'm fine.
The PA said my doctor wanted me to also add Prilosec or Nexium on top of the Carafate. I told her that I'm on diabetes meds and can not take either of those as they enhance the effectiveness of the meds. So, it will be discussed with Endocrinologist on the 21st and the GI doc on August 5th. Looks like I may need to switch to insulin. Crap.
Due to back surgery (2 rods/6 screws), I have to sleep on my side which precludes sleeping with a wedge. Also, years ago I discovered that my migranes were the result of sleeping with my head elevated so I swithced to a flat pillow and voila! No migranes. Now that I sleep on my side, I have a fat pillow again but never sleep on my back.
I'm glad the wedge is working for you. My mother raised the head of her bed 6 inches to deal with heartburn. When I visited, my husband and I slept in her bed and in the middle of the night, both of us found ourselves sliding off the end of the bed! I don't think I could ever sleep like that (unless it becomes absolutely necessary).
In the meantime, I'm trying to stay away from spicy foods which I love and eat more bland, boring food. Take away fat and spices and you get glop. There doesn't seem to be any on line support groups with recipe sharing like there are for diabetes and that's really too bad.
Cat
Cat,
My GI doc told me that the Nexium and other PPI can make the BRD worse or aggravate it so I stuck with the Carafate and after the 8 weeks was able to go off of that too. I have nausea some mornings but not every morning. I stay away from fried, spicy or fatty foods.
You can find free healthy recipes at Garden of Life under the topic A Way of Life, or Mayo Clinic.com or foodnetwork.com or just google "Healthy Recipes" and do some searching to find the ones you like. I enjoy spinach salads with olive oil and veggies that are easy to digest. You can sprinkle Parmesan cheese on top. I also like to use an indoor grill (a generic brand grill is cheaper) to prepare some chicken or an occasional hamburger. I also buy raw almond butter (which has healthy fat) to snack on.
Blessings!
Woody,
Thank you for the information. I need to look up those web sites for ideas on low fat but flavorful foods. I love spicy food so this is going to be difficult.
Cat
I am SOOOO unbelievably happy to have found you guys! I was diagnosed 5 years ago with mild GERD which improved with Nexium x 8 weeks. I was able to come off meds (except 1 OTC zantac before bed) and was able to eat anything I wanted. 3 years ago, I started having severe stomach bloating, excessive belching, stomach pain and reflux at nite. I would also have tachycardia which was worse w/the stomach flare ups but the cardiologist could never find a cause for the tachycardia. I would be up at least half the nite every nite because of the symptoms. I was diagnosed as having H.pylori infection, treated w/one round of antibiotics, and put on nexium again. The symptoms only improved slightly with the nexium and worsened again last fall (2009). I had my gallbladder removed in December '09 due to a huge (1 inch) gallstone and was told that was what had been causing all my problems.
Although I've continued to take nexium every day, I've drastically cut down on the fat intake in my diet, I sleep on a wedge pillow and never eat or even drink water after 5:30 pm, my symptoms have continued with occasional flare ups that are really severe. I can't eat anything for dinner other than plain roasted turkey lunch meat and plain bread or I'm guaranteed a full nite of misery. I can't tell you the last time I slept thru the entire nite - even on a good nite. I've missed four days of work just in the last month because I've been up the entire nite in pain, most recently 3 days ago. After the most recent episode, my doctor started me on a probiotic and sucralfate which has helped tremendously with the acid reflux but hasn't stopped all my symptoms. I had an EGD today and was diagnosed with bile reflux and gastritis. My biopsy is pending, so I don't know if the h.pylori infection ever cleared. The current plan is to continue on nexium, sucralfate and the probiotic until my follow up appt.
I'm relieved to find out that there is an actual cause for my symptoms. I was beginning to feel like my doctor, my co-workers and my family didn't believe the severity of my symptoms and thought it was all in my head. I was beginning to wonder if I was crazy b/c no doctor could explain my symptoms.
On the other hand, it looks from the research that I've been doing today and after reading the comments here, that my big fear - that it would be a chronic problem with no cure - has been realized. I'm so thankful to have found all of you and to know that I'm not alone & that I'm not crazy. I hate to know that all of you are going thru the same misery as I am, but at least we're all in it together. It has made me feel so much better to know that there are others out there with the same problems and reading about options to try is wonderful. Thank you so much to all of you that have posted!
Hey Jillo67,
You are not crazy. I had someone suggest recently that I had an eating disorder because I was so selective about eating healthy unprocessed and unrefined foods. When you eat something and it creates Gutastrophe - excruciating pain in your gut, you start making some changes in your life.
I am SOOOOO thankful that Dragonlady started this blog. I am celebrating the fact that I gained 4 pounds in 3 weeks. I am not taking any meds at this time. Once I got off the Carafate and Nexium I actually felt better and could eat better. I still eat small meals. I avoid eating 3 hours before going to bed.
In the book Gut Solutions by Brenda Watson and Dr. Leonard Smith, you will learn the benefits of L-glutamine (5 to 10 grams per day on empty stomach) and gamma oryxanol (from rice bran oil), probiotics (2 to 6 billion per cap / 2 to 4 caps per day), fish, flax and borage oil (three to six 1000 mg caplets two times per day) and other supplements. They also suggest DGL (licorice between meals) and aloe vera juice (about 5 ounces) between meals. Dilute with water 50% or more. They share a lot more information. I found the book online and purchased a used copy for half price.
Alyce Sorokie in her book Gut Wisdom gives you a list of thing to do to improve the function of your gut on pages 175-178. She suggests things like: increase your fiber, take probiotics, increase your water intake (half your weight in ounces) or 8 glasses (about 2 liters) per day, chew your food until it is liquid (20 times), try food combining (google food combing charts) and more. I found this book in the public library but later purchased it online at a reduced price too.
Don't forget to try Chamomile tea and check out the alternative medicine section under the Mayo Clinic / Bile Reflux.
Keep looking up.
Hi Everyone...I am the owner of this site, and I have been very sick for awhile. To the point I haven't been able to get on here and answer questions or say hi like I had been. Today is a good day...I hope tomorrow will be too. I read each post, and I started to cry. Not because of the condition but for all of you as people. WOW! We forget we are wonderful people with the pain and constant suffering. My episodes are lasting longer and longer. Somedays it is very hard to function. It's nice to know there is HOPE out there. Maybe not in the medical community, but at least in people and their hearts. Please keep the words of encouragement coming.. God Bless you all. (PS...God's son....Thank you)
We pray you have many more good days Dragonlady.
I read something written by Mark Hyman (a physician) that I have found helpful. He reinforces what many have noted in previous paragraphs above:
1. Ask your doctor to kill the bugs he, if he finds them like H. pylori, yeast, or bacteria in the small bowel. 2. Look at your diet. Try to eliminate dairy and gluten. Avoid alcohol, caffeine, citrus, tomato-based and spicy foods. Don't eat 3 hours before bedtime. Eat unprocessed, unrefined foods. Steam your veggies, if raw ones bother you. Grill or bake your fish and chicken. Enjoy small meals 4 to 5x per day. 3. Mark suggested these natural remedies which have helped me and others:
-2 or 3 digestive enzyme tables with each meal
-probiotics 2x per day (I take 6 billion each time)
-3 to 5 grams of glutamine powder in water (I take mine in a tablespoon of rice bran oil)
-2 to 3 chewable DGL tablets (a form of licorice) 15 minutes before meals
-200 to 400 mg or magnesium citrate 2x per day
God bless you. Keep looking up!
Reading this article has really opened my eyes...i am self employed an unable to afford good health care. I have been to the Dr. several times, had an endoscopy and an ultra sound all of which hav lead to nothing more than extreme medical bills...the symptoms expressed here so accurately describe what im going thru as i too am of small stature an hav lost 17lbs. My most painful experience is the vomiting as i do it after nearly every meal if im even lucky enough to get thru a meal at all... You all are truly courageous an strong because i hav been healthy an athletic my whole life but this disease has shaken my entire world . Please create a support group as i would love to talk more with people who can relate to my condition !
Hi IceMike5, that is a great idea. I will have to check into starting a support group. My main goal here was for people like me to have a place to go and realize they weren't alone. Believe me, I felt very alone when I wrote my articles. You are so right, people just don't realize how much this shakes your world to the very core, physically and emotionally. Everyone suffers in different ways with this condition. Mine has many trigger factors, so changes in diet, exercise, medicines, miracle cures...they don't help. It is a triumph to eat a meal, it is a triumph to gain weight. I will see what I can do about a support group. In the mean time if you can't keep your food down, try taking some Maalox a half hour before you eat. Also eat smaller portions or what you can. I have found even one bite is better than none, even if my plate sits there awhile and my stomach is punching my poor body to pieces. The Maalox might help at least to get a meal down. The thing about this condition is it forces you to really pay attention to your body. Every ache, pain, sniffle, etc...is important. I can not express this enough. Just because there is a base criteria for what the doctors define as Bile Reflux Disease, each person suffers from it differently. Also if you can't afford your medicines, check into the Prescription plans the drug companies offer. They can help, along with your doctor, in getting you the medicines you need cheaply, or sometimes for free. That will help out in costs somewhat. PS... when I am feeling really sick to my stomach...I buy a milkshake. The theraputic affects are great, the milkshake is yummy, and my stomach isn't so hateful. Maybe you should try something simple like that too.
Thanks Woody, More good days would be great...However, keep in mind what works for you, may not work for the next guy/gal. It all depends on their symptoms and how Brd is affecting them. For me a damaged pyloric valve means I constantly have bile in my stomach and colon. Even a simple infection or allergy flare up is horrific for me. Surgery (people have mentioned in other posts) is not an option since it will only make things worse for me (but it might help someone else). The information in your posts seem to work for you, and I say...GREAT, please share them. Then I sit here sadly and wish those things could work for me too. I tried them, they didn't. It would be great if we could trade our tired bodies in like cars. I'd get a new sporty model. The greatest gift is not feeling alone with this condition....good days and bad, especially the bad. People just really don't know how much a person suffers physically and mentally with Brd.
Hi Jillo67, I am glad you found my article. My hope when I wrote it, was to let people out there, like myself, not feel so alone with this condition. At the time of my writing, the only thing I could find was a small article with the Mayo Clinic. That was so dishearting, no one to talk to, doctors treating you like your were crazy, and family and friends looking at you helplessly. I cried alot, got angry with the idea of no cure, and I am sure there were a half dozen other emotions I felt as well (and sometimes still do). If this article, or even some of the posts can help you or anyone in any small way, then I feel very glad I was brave enough to share my experience with this horrible condition with you and all the other wonderful people who have visited this site.
I've had BRD for a couple of years and suffer from all of these horrible symptoms. The worse for me is the reflux in the throat that makes me feel like I can't swallow anything or I can't even catch a good breath. My question is does anyone ever have mid back pain associated with this disease. I am taking carafate which causes constipation and I'm thinking the back pain may be caused from that.
Hi Kacey, I usually try to stay off the carafate unless I am having a flare up. Instead my doc has me taking 2 nexium a day instead of 1. I actually like this better because I seem to be responding to it (though the guy next to me might not respond very well).
Hello Kacey,
I have been taking Carafate and cholestyramin for three years, so I too had severe problems of constipation. I tried lactulose and paraffin, then I discovered PHGG. PHGG means "Partially Hydrolyzed Guar Gum. It is not a medicine, but an alimentary additive. I buy it in Italy under the brand name "Benefibra" (sold as a white powder) and I take one teaspoon a day of it, dissolved in a big mug of fruit juice or milk. I started taking it three months ago and since then I have no constipation problems at all. I hope you find something similar.
thanks so much, I will have to try this.
Hey Kacey,
I have had the mid back pain too. Mine felt like someone was sticking a knife in my back. Even sitting bothers me (at work on in the car) if the seat is too hard or presses on that area of my back. My doctor thought it might be an esophageal spasm. When I took the carafate it did not seem to constipate me much because I eat lots of healthy food with fiber including spinach, Ezekiel bread, real fruit smoothies (non citrus) and drink 2 or more quarts of filtered water per day. To anyone that needs hope right now I leave you with this thought from the Creator: "What is impossible with men is possible with God."
Keep looking up!
Kacey,
I too have severe back pain- that's how I found out that I have this wretched disease. I thought I had pancreatitis again but 1 CAT scan, 2 upper GIs, 1 x-ray, and an endoscopy proved otherwise.
The back pain feels exactly like Woody described- life a knife. I also find that the pain radiates to my left shoulder/upper arm and when it's really severe, to my right shoulder as well.
For anyone who has the shoulder pain, I've found lidocaine patches are fantastic for pain relief. I was prescribed them for nerve damage in my leg but they never worked but they do work for the shoulder/arm pain!!!
I am at a loss though for how to relieve the stomach pain. Aspirin is forbidden. I'm not supposed to take any tylenol drugs like Vicodin due to some liver damage that I have (besides, the pills are so big I keep vomiting them up.
What do you do to stop the pain? In the hospital, they gave me Laudinum shots but obviously, that's not something I can do at home. I have some leftover morphine pills from back surgery. They're very tiny and if I cut them in half, I can keep it down. That gives me only 5 mg of morphine but I'm so afraid of addiction.
Cat
Thanks everyone for the helpful information. I appreciate any help I can get. I started having a flare up of Bile reflux again 1 week ago today and every day has been horroble. I feel like I have something stuck in my throat all the time. It really scares me. I'm also having a fullness feeling under my left rib. Has any of you ever had a flare up to last this long? I am taking the carafate three times a day and I was hoping I would feel better by now. It scares me because of the risk of cancer and it's all I can think about.It's looking like another trip to the doctor.
Kacey...Yes I have flare ups all the time. I have been on Carafate 3x's a day for 3 years. Is it me or do I actually feel better when I am NOT on the carafate? I stopped the 3xs a day a while back, dropped it to 1x a day. Then doc switched me to 2xs a day Nexium. I stopped the carafate and actually feel better. The thing about carafate, it absorbs all your medications, so if you take a pain reliever at the same time or an hour or so later, you aren't getting the full affects of the pain reliever. Thank goodness my pharmacist told me this. I am beginning to think Carafate does more harm than good. I have been off it a week now, and actually don't feel nausea and feel the other meds are doing what they are supposed to be doing.
Hey Kacey,
Have you tried Food Combining? I really believe it helps with the pain issue you asked about. Prior to BRD most of us did not have to worry about food combinations but now I believe we do. You can google Food Combining Charts. Find one that lays it out clearly. Read some of the info written about this topic. Try eating this way for 4 or 5 days and see if it helps you. I eat raw spinach or other greens with a protein or with a carb (like potatoes and or whole grain bread) but I avoid eating a protein with a carb. Proteins need an acidic environment and carbs need a more alkaline environment. I eat fruit (no citrus) alone usually one hour before carbs or proteins since fruit passes through the stomach much faster. If you have not tried ginger, it may help some with those who have nausea. You will never know until you give it a try.
Hey Dragonladay! I thank God you are finally back; I was worried when I couldn't hear from you. I thank God so much for your life and I'm happy that you are fine. Things have not been so well with me as well but I think the Lord's strength and grace have been my portion all this while. I virtually don't take any meds again - only prayers - and it's working for me. I will remember you in my prayers always, and all you other BRD sufferers. My message to y'all - the Lord knows why we have to go through all this, in His own time, He'll get us out completely. All the best to y'all. You can call me on +233 244 681 681...
Gods son.... thank goodness for you. Have missed you too. My headaches are getting worse, so I have been non-functioning most days. (Darn Allergies!!) I am glad to hear you are feeling better though. It made my day to hear from you. Amazing how a nose like mine can bring such havoc to my stomach. Heard Arizona is great for Allergies....The Keys sound good too. LOL Hugs for you!!
Woody, do you eat anything with seasoning on it? I have discovered garlic makes me sicker than a dog. I was told that garlic has something to do with Sulfa....which I am allergic to meds with sulfa. Just curious.
Hey Dragonlady,
I do use a touch of sea salt, a little ginger where appropriate, turmeric, olive oil or coconut oil and sometimes I just use a little butter or smart balance.
If garlic bothers you, I would certainly avoid it. Last December, just prior to when my worst BRD episode occurred, I had taken 3 garlic capsules (powdered form). I really think the garlic aggravated my BRD. I had also eaten the hottest spiciest soup ever that same meal so together the combination created quite a "gutastrophe" and took me nearly 7 months to turn around. I have tried eating food cooked with a little garlic this month with no problem but I plan to avoid taking it as a supplement.
Blessings!
BTW, I do use other seasonings if they are not spicy, hot or on the avoid list but the ones I mentioned above are some I use more often.
After seeing my doctor this week, I've been told to avoid tomatoes, onions, citrus, vinegar, anything acidic like strawberries and tart apples, chocolate, spices, and the list goes on.
I'm trying to find food that I can eat that won't send my glucose levels soaring (I'm also a diabetic). At the moment, about the only things that don't make me feel sick are bran flakes, dry toast, and brown rice- way too many carbs.
Does anyone have any suggestions?
Cat
Hi all, I just wanted to introduce myself... My name is Sue I am 35 yrs and I live in Melbourne Australia..... I had my gallbladder removed almost 3 years ago and was ok for around 6 weeks. No complications to surgery.... 3 stones and my only symptions for gallbldder disease were PAIN attacks, no nausea, vomiting or diarhea, not even felt sick...And here I sit still to this day feeling sick to my stomach..... A type of feeling which is almost undescribable and almost unbelieveable....
I am in the midst of testing testing and testing but all has been ok so far.... I had a colonoscopy and endoscopy done 3 mths ago and "apparantly" all was ok....
Given my symptions....constant nausea, feeling sick upon waking, bloating, bile salt diarohea which is controlled with questran, vomiting and feeling better for a little while and waves of feeling "strange" has anyone been diagnosed with BRD and doesn't suffer with much upper body pain. Like most I get the burning while vomiting...
Lately I went back to my GP and it seems I am travelling down the path of "maybe you should see a counseller"..... I know how I feel and what I feel. It is not in my head and yes I feel bloody depressed as I am fed up with feeling sick day in day day out.
I have a 3 year old and I don't want to be one of those "too sick" mums to her....
I really feel that after reading all the above posts that I maybe onto something, yet no doctors have suggested BRD yet.....
Any opinions?????
Sue,
I went for almost a year feeling pretty awful. I wasn't vomiting or in much pain. I just didn't feel "right". I too got the "all in your head" attitude from the doctors. It wasn't until I had a full blown attack in June that the doctors finally took me seriously.
The only advice I can give you is that you need to take control of your own health (including keeping notes on symptoms and triggers) and if possible, see a GI specialist.
If it is bile reflux, GPs don't know enough about it to be of much use. Even GI doctors don't see a lot of it. My doctor told me that I'm the only one in the entire practice of 11 GI doctors. So you need to find someone who has some experience with it.
Good luck and keep posting. It seems that there are so few people with this condition that there is no where to go for help. It is so frustrating!
Cat
Hey Cat,
I saw your plea for help for diabetics. I googled Diabetic diets for Gastritis or Diets for Diabetics with gastritis and saw some options. You can also google food combinations and choices and look at the chart (keep in mind the foods that are permitted for diabetics).
I cannot tell you how helpful "food combining" has been for me. It may not work for everyone but I tried it even though I was very skeptical. It took me almost a week to see the difference. I am not a diabetic but I have had much pain and frustration with the normal treatment options that most of us try. You must check out what Sherry Brescia has written (great taste, no pain). If you prefer to see other resources you can take a look at Amazon's list for Food Combining. I have also suggested the books Gut Wisdom and Gut Solutions before.
No one can go through this alone. My faith in God has sustained me when no one seem to understand what I was going through. I do believe you have to treat the whole person. I recommend these resources: The Bible (take like medicine - 1 to 3 times daily and as needed), The Purpose Driven Life - Warren, Crazy Love - Chan, and Radical- Platt. Forgive anyone who has hurt you. Look for someone you can bless or a need you can meet.
Keep looking up!
I think we have all seen that "It's all in your head" look from the doctors. The best time to get a diagnosis is to have anendoscopy done while you are having an episode. I don't have upper body symptoms, though they have me on GERD medicines to reduce acid. I had doctors prescribing all sorts of "Anti-depression" medicines. Then my boyfriend got sick of it and we fired that round of doctors, found new ones, and actually have had some results. The main thing I kept hearing from all the doctors was "How is your stools?" Start watching them. If they look like coffee, you have blood in your colon or stomach. If they are tiny, you are retaining fecal matter, and that is very painful, and dangerous. I can not express enough on here to watch and know your own body. You are not crazy, and BRD does make you very depressed not knowing what to do for it half the time. One doctor suggested I keep a journal of how I felt each day. This helps since your body does different things each day. It also helps with the doctors, because you have documented the symptoms. Each episode for me is different, but over the course of 3 years, there does seem to be trigger factors i.e an infection, sinus/allergies, constipation, certain foods, spices, etc... Never lose you hope, because there will be many more doctors looking at you like you are crazy when you are not. That is why I started this site. At the time I felt so alone. So I hope this site is helping a few people, since BRD isn't as huge as GERD. A DO told me once, that they just don't know what to do for someone with this condition. Many medicines are prescribed to relieve symptoms, however, are sometimes more harmful or not needed. GI's treat it like it's nothing. I don't think any of them realize just how much pain and suffering you experience with this condition. I hope each of you find a doctor who is understanding and wants to help you feel better. I feel for each of us that has to live daily with BRD.
Hi I have this problem and have had it for as long as I can remember when it strikes it leaves me totally incapably of doing anything. I am now nearing 50 years and it affects me so badly that days on end I will not be able to do anything until the system clears itself or I vomit the bile from my stomach. I believe that sometimes it is caused by my in take of sweet things so I try by all means to reduce my sugary intake and use MMTs to reduce acidity.I have my gall bladder.
My GI scope a month ago showed lots of bile in stomach and gastritus. I had a CAT scan yesterday and they saw no stones or blockages or problems with the Pancreas or Gallbladder.
That leaves only the pyloric valve that could be causing the bile problem, right? Would a CAT scan have shown a malfunctioning pyloric valve if mine was?
Have any of you folks tried swallowing Psyllium seed husks or Flax seeds ground up? They say it can absorb excess bile in your stomach and carry it out. I wonder if that would work if you took a lil bit every couple hours?
I'm on Carafate at night and Prilosec during the day. I hate the Prilosec though because it makes me groggy and achy. Any of you folks on Nexium or Protonics and do they make you tired and achy? I must be sensitive to acid reducers because even the OTC ones make me tired- like Zantac, Cimetidine, Famotodine.
Lori - I take Nexium twice a day, and do not feel groggy or achy. However, I do feel achy when I take the carafate. They discovered my pyloric valve damaged after a Endoscopy. You might want to ask if the CAT scan will detemine if yours is damaged. Since you already had the scope done, you might not need the CAT scan.
Vince - Have you seen any doctors for what you have wrote?
I have on a number of occasions though they have not been helpful. Some of the earlier doctors who attended to me could not understand what I was on about. So generally what I get prescribed is magnesium tricilcate tablets or syrup which not always works. When maybe I need more tests to be doen so that I can have better understanding of what exactly the problem is all about.
Vince, an endoscopy will help alot to see what is going on. Look at the type of doctor you are seeing as well. Is he/she a DO or an MD? I had to get rid of my DO after 15 years, because he admitted to me he really didn't know what to do to help treat me. He suggested an MD because they read up on lesser known conditions. Also, keep in mind since they don't really know what to do with us, they prescibe many things that won't help. The trick is knowing what helps you and filtering out the stuff you don't need. For example: I have carafate, but I rarely take it because it constipates and generally makes me feel bad. The doctor doubled the dose of Nexium to 2x's a day and I feel better where I don't feel I need the Carafate (though it is on hand if I need it). The same with the Bentyl, and Phenegran. I only take those if I absolutely have too, but they are on hand. Know your symptoms well. Do you have lower back pain and small stools? Do you suffer from extreme allergies? Do you get sick every time you eat something with garlic or other spices in it? These things are good to know about yourself because it is easy to take garlic out of your diet, or take a mild laxative before you go to bed on occassion to relieve some of the symptoms. In my case I have to control my allergies or it all drains into my stomach and creates havoc. Other things might contribute to excess bile as well. You might have a bladder infection or suffer from some other condition like Irritable Bowel Syndrome, etc... treating these along with your BRD will also help you feel better. The one thing I have learned about BRD, is that you have to know yourself very well. Because it is you who will have to guide the doctors along with most of your treatment. I have had to fire quite a few doctors to find some that would help. Never give up hope, and always remember you are not alone.
Hello Everyone - Grateful to have fouund this webiste. I was diagnosed with BRD a month ago and it has been a terrible experince - I guess I don't have to tell any of you that. I am down 10lbs. Have had an andoscopy and like Lori was told I have gastritis with a lot of bile in the stomach. As soon as they told me it was bile reflux and I looked up the symptoms I knew I had it. Have the terrible taste in the mouth, ect. I also had a CAT scan after terrible styomach pain which my primary care belives could have been from one of the meds they put me on Dexilant. I am off that now and on carafate and prilosec. Still have burning sensation every night. Last week I went to an alternative medicine doc who has very good credentials. He prescribed some herbs and beleives this is the result of the liver being surpressed and causing bile to rise (I have never had any type of stomach surgery). I guess time will tell if the herb route works. Next week I am going to the University of Penn to see oneof thier top docs. Thanks so much for this website dragonlady - it is a support and great info sharing. Quick question - had anyone had trouble sleeping - even when not in pain - I have horrendous insomnia.
I do believe that this is the only group on the entire Internet for those of us with BRD. Is it really that rare or perhaps there are a lot of people who just think they have acid reflux and ignore it.
Last week, my GI doctor put me on Colestipol (Colestid) and it seems to be working. Since the gall bladder surgery 2 1/2 years ago, I've been plagued with diarrhea that is further exacerbated by my diabetes meds which also cause diarrhea.
This drug immediately stopped the diarrhea- much better than Cholestramine (sp?) and easier to take. It has helped with the burning in my stomach as well. It binds with bile so you can pass it through without it being reabsorbed and reused by the body.
It's not without problems- the pill is the size of a golf ball (just kidding) and has some risk factors. However, at this point, I'm just happy that they bile isn't killing either end of my digestive system at the moment.
Cat
Good day Dragonlady1967
Its good to hear from you and thanks for the post and the blog I have found it very useful ever since coming across it. Your advice is indeed important to me,whilst the country I am in, might not be endowed with the same medicines that you guys are accustomed to, the advice you have given is really useful as it helps me to try and finds the source of the problem and get the proper medication.Well my latest doctor is a GP meaning a general practitioner maybe I need a specialist who will be able to give proper advice and diagnosis.I believe I also need to have the endoscopy done as it will be able to tell exactly the situation in my stomach. Keep up the good work.
Regards
Vince
Your very welcome Kelly. This will sound mushy...but I am so glad I posted this article. I felt so alone with BRD and if it can help even one person with the same condition, then I am happy. Hugs to us all, this condition is so life altering and we can use all the support, suggestions, and positive thinking we can get. To answer your question about sleep, I guess it is possible to suffer from it in some form or another. (Either from medication reactions, worry, or just plain anything.) Take a look at your medicine side affects. I talk to my pharmacist alot, and sometimes they can tell you something mild you can take that won't affect your other medications or your stomach.
Vince- Your welcome too. Do you mind me asking what country you are in? Make sure you tell your GP all your symptoms....even little ones.
I am in Zimbabwe, a friend of mine recommended some herbal plant that is a common garden plant very bitter though. It did not work that much for me though he said it had worked for his daughter, as she recovered after having become nauseous and vomited as well as feeling dizzy coupled with a head ache. Incredibly as it may sound I was helped by taking raw garlic and some onions I feel a lot better. Not fully recovered but far much better than I was feeling before. Another friend of mine who says he has been suffering from the same symptoms I have mentioned said he has been greatly helped by taking a tablespoon of whiskey in lemonade and this has alleviated his situation a greatly deal,I am yet to attempt this as I do not drink. The particular whiskey is called Southern Comfort
Vince- I am not sure some of those remedies would be wise if you have Bile Reflux Disease. I have heard a tablespoon of whiskey with honey helps a sore throat. However, it is just coating the throat and the condition is still there. Milk always helps me (I think I have a monopoly on milkshake buying), but again, it just coats the condition so I can feel alittle bearable. The depressing part is knowing they don't have a cure for this yet. So I am not going to say "don't" try those things to help you feel better. Also keep in mind, your friends might have similar symptoms, but that doesn't mean they have Bile Reflux Disease. They could have had heartburn, Acid reflux, upset stomachs, etc... The one thing I have learned with this miserable condition is you never feel 100% great. You might have good days where the nausea doesn't seem so bad, or pain not as severe, but it is still there. Bile is always there. It's what our livers produce. My intentions are not to upset you with the truth, but to educate you so you can make good decisions for yourself.
Dragonlady1967
Your sentiments on this are never to be taken out of context I fully appreciate what you are saying. That is why I have put the scenarios I was told by my friends and have not taken up some of them. In as much also if they offer temporary relief its also okay. THe best obviously isd to lknow ones'position before embarking on any form medication
I have suffered for years with burning.. the drs say acid reflux and i have all the tests done.I am now taking 2 dexilant 60 mg every morning..It worked for a few weeks and now i am in pain again. I also suffer from insomnia and i am allergic to sulfa and garlic makes me so sick.I cant have any spices or fats at all. I have had a cat scans,gall bladder sonogram and scopes.. The last scope i had ripped my colon and i lost alot of blood. No more tests for me..
Vince- Absolutely...the best position is knowing yourself.....Hugs
Kim- I have found that because I am allergic to sulfa medications, the docs have a hard time figuring out what to prescribe. Plus, being highly allegric to chicken dander/feathers, other medications like a simple flu shot could kill me. Garlic has sulfa in it. I didn't know that until recently. Guess I just never thought about it when I'd chop it up and put it in food. I have to take 2 Nexium a day now, but I split them up, one in morning and the other in early evening. It seems to work alittle better since by evening I am aching. My MD put me on Sevella to see if the aches will subside some. The thing I am discovering about the medications is that many of them I have been prescribed just sit there, but when I need it it is there. ie. If my colon and stomach start to spasm, I have Bentyl, but I don't have to take it every day. Or if the nausea gets severe, I have Phenegran. Plus, Maalox is good to have on hand when everything just doesn't seem to be enough. Don't be afraid to fire your doctor(s) and find new ones. Your health is most important, and the doctor you choose should believe you, and do everything they can to help you feel better. I am assuming you still have your gall bladder? It might be the culprit to alot of your misery.
dragonlady-i do still have my gallbladder..I am sensitive to medications..Bentyl made me feel drugged up..I have also tried the acid/alkaline diet..didnt help..I even took alkaline suppliments. I lost my health insurance so i am kinda just trying to figure it out on my own.I have tried splitting up the meds but it didnt make a difference..I had my gallbladder checked and it is working fine (they say) so i kinda give up.
Yes I agree Bentyl seems to have a sleepy affect, but it calms the colon and stomach, so they don't cramp and spasm as much. You might want to do what I did when I lost my insurance coverage. I still see my MD, but when he prescribes something, we make sure it is on a drug assistance program. In most cases, the medicine is free, and takes alot of the stress off you as to how to afford it. I spent some time looking the websites up, mainly because my doctor was prescribing the generic forms in hopes I could afford those. Once I found the brand name, I was able to look up each website, and see what programs they had to offer. I had to bring this up to my doctor though, so I could employ his help with the paperwork. It has been a god send, since I can't afford my medicines right now. You might try this approach as well. It might help you. Never give up. You know there is something wrong. It's their job to start believing you, and start helping you feel better. I can't remember how many tests I have been through where they came to me and said "Everything looks ok". I was still sick, and didn't give up. Don't be afraid to look your doctor in the eye and tell them to start listening to you. They don't live in your body, you do. At some point, a test will come back with something. My current doctor (MD) finally told me off one day. It was because I didn't mention a symptom I thought was irrelvant. Even small things might help. Good doctors will do this...look at everything and listen. They are out there. You just have to fire a bunch of them to get to the right ones.
I am recieving my meds through the company..free..The dr (who is also a good friend was giving me samples before). I mainly have constant burning.The only time i feel good is when i wake up and my stomach is empty...Once i eat something it starts burning.Some days are worse than others and i do think stress and anxiety makes it worse.I take ativan as needed but I really dont want to take a antidepressant.
Kim, I also have constant burning, for more than a year now and it never stops. Sometimes, it goes down... The only time I feel good too is when I wake up from bed and my stomach is empty and even with that, there's still some burning. I went on antidepressants and anti-anxieties briefly but my condition was even worsening. I'm on no meds, cos nothing seems to help me. I'm waiting for my miracle. All the best
Hey God's Son,
Have you ever tried using Food Combining? I have had the burning and the pain and it drives me bonkers but since I have tried eating the right foods together, it has eliminated that problem for me. I hope it helps you too. I have been taking Ginger and eating cooked ginger with grilled chicken or fish and this has also helped my digestive system. I have worked quite a bit in Southeast Asia in recent years and believe I have also had problems with parasites. I believe many in the USA may have this problem as well because of all the pork and rare meats that some like to eat. I found this partial list on the healing food reference link which is a more natural way to treat parasites: (READ MORE BEFORE YOU TRY THEM TO AVOID ANY PROBLEMS WITH MEDICATIONS YOU MAY BE TAKING.)
Healing foods for parasites*
Pomegranate seeds (9,5)
Coconut (8)
Rhubarb root (14)
Black walnuts (14)
Scallions (12)
Chives (12)
Pumpkin (14)
Healing herbs for parasites*
Wormwood (13)
Neem tree (13)
Papaya (13)
Blue cohosh (13)
Parsley (14)
Nettle (14)
Horehound (14)
Tarragon (9)
Peppercorn (9)
Cascara sagrada (14)
Chamomile (14)
Garlic (7,9)
Hi, I am so glad I found this site! I'm not sure if I have bile reflux but here is my story. I had my gallbladder out in January. I had stones in the neck of the gallbadder and was I should have it removed. Wish I had it back now! I did good after the surgery. Had some bile diarreah which improved. Hardly get that anymore. But I started getting sick about a month later. Was very nauseated and burning throat and aching stomach. My dr said it sounded like I had gastritis and GERD and put me on Omperazol. That helped for a while and then the throat burning came back I thought it was making me worse so I quit. Started feeling really good again. Still was getting the bile diarreah about every 2 weeks. Then by the end of July I started waking up at 2:00 or 3:00 in the morning very sick to my stomach. Never have thrown up. Then I would feel like crap the rest of the day by the next day back to feeling pretty normal. However my throat was burning again but no heartburn. Went to the dr and was sent to the Gastro dr. Well, it was 2 month wait to see him, so I seen the physicans assistant instead. She put me on Carafate. Took it for about a month and then started getting sick again. It seemed like the Carafate made me sick, so I quit taking it. Felt really good again for a few weeks and then started waking up again very sick to my stomach and very hot. Finally my dr had me get the scope done. I had the scope done about 3 weeks ago. It showed that I had a small hiatal hernia, 2 superficial ulcers and mild gastritis and a mildy inflamed esophagus. Was put on Protonix and it felt like it was working right away. Felt really good up until 2 weeks ago. I got put on Augmentin and my acid reflux really flared up and my throat has been on fire since then. Then on Monday night, went to bed and bam! woke up at 2:30 a.m. all hot and very nauseated but still have never thrown up. So I figured maybe the Protonix was not working anymore. Called the gastro dr and they gave me Dexilant to try. Took it for two days and felt worse so I stopped taking it and went back to Protonix today. Did make my stomach feel better this morning but ever since Tuesday morning I have been very sick to my stomach, it aches and growles, is bloated and my throat is killing me. So I'm wondering if I'm getting bouts of bile reflux and it just didn't show in the endoscopy I had or is this just really bad acid reflux? Sometimes I wish I could throw up and this had been the worst week ever. Nauseated every day and feel like crap. Have not been able to sleep at night. I tried a Carafate a while ago and it just made me more nauseated so I'm not taking them anymore. I sure wish I had my gallbladder back. I should have never had it out! Best wishes to everyone. This is really miserable and I'm supposed to be going on vacation in 2 weeks!
Back in 2000 when I had my gall bladder removed, the docs stated you would feel crampy and so forth (bile in your stools, crampy stomach, etc...)as your body adjusted to not having a gall bladder any longer. True to form, these things happened. For 8 years, I led a normal life with no symptoms after my body healed from the gall bladder surgery. That's when the Bile Reflux Disease reared it's ugly head and all it's miserable symptoms. I am not saying you, dragonfly, are not experiencing BRD. However, you just had your surgery, and there seem to be many other symptoms you are suffering from, including actual ulcers. It is very good you are very on top of your symptoms and are noting what the medications are doing to you. Unfortunately, if you are experiencing BRD, there is no cure, just management. So you will be experiencing these symptoms on your vacation as well. I truly hope you are just healing from your surgery. However, remain on top of all your symptoms even little ones. This disease is so miserable, because Bile Reflux isn't GERD, but it does cause Gastritis which can cause GERD. So many different combinations of miserable. I too have given up on the carafate. It just seems to make me sicker than what it is supposed to be doing....making me feel better.
Thank you dragonlady. I too, hope I am just healing. This is the first time I have been sick for a full week. My stomach has burned non-stop, been sick to my stomach every day, it gnaws like it's going to eat itself and I had been consitpated the whole week and finally yesterday I started going a tiny bit and today have went the bile diarreah twice so far. So far my stomach don't feel too bad today but still kind of queezy with the lump in my throat. I called the gastro dr on Friday but the soonest I can get in is in October. One could die before then!!! So, since I'm not in major pain and I'm not vomiting, just very miserable, I'm going to see my regular dr on Tuesday. At least I know I can get in there. I truly hope I am still healing. I never had stomach issues before and how I got superficial ulcers, no clue. I started back on the Dexilant to see if it does anything. So far the burning in the throat has subsided somewhat. Lots of prayers for all you with bile reflux.
Thanks so much for this information. It is good information that I wasn't told either because I have the same thing. I had 40% of my stomach removed due to ulcers and also had my gallbladder removed and I had a gastroscope that showed my stomach just full of bile and I was bleeding, which I thought was coming from my colon but my stomach was so inflamed from the bile it was causing me to bleed and pass bright fresh red blood every time I had a bowel movement. I am also on medication, however it does not seem to be helping. I am having severe symptoms and attacks daily, and eating just worsens it. Thank you for your comments because I had never heard about this before until I also looked it up on line because my doctor did not explain it to me fully. This is definitely not like GERD, it is much worse.
I agree Sassy, having BRD is much worse than GERD. It's a daily fight just to feel half way decent, and I don't think people realize how lucky they are not to have this condition. How lucky they are to sit through meals and not want to vomit, or have severe cramping. Then there is the constant pain.....I don't wish this condition on anyone. It is truly the most miserable condition. I get thanked alot for my article(s), but I truly want to thank each of you who have commented and have to experience these same things with me. I don't feel so alone, and I hope neither do any of you. :-)
dragonlady1967,
I just had an endoscopy done on 09-15-2010 and got told I had bile reflux in the stomach. I am 26 years old and always been a small person. I weigh about 95 to 99 lbs i have only hit 100 lbs maybe 2 times, but I can't stay that weight.
i have the same condition also caused by having my gall bladder removed, i have exactly the same sypmtoms AND bile flowing out of the other end, i go to the toilet numerous times day and night and its mostly bright yellow slime, according to my research its fairly common following gall bladder surgery yet it still took the doctors 2 years to send me for a CPAT scan to test for it and even then they only did that after i researched it myself and found out online that its a common complication. i have medication to soak up the excess bile but it doesnt work all the time so alot of the time im glued to the toilet and have to get family and friends to take my kids to school. its debilitating and excruciatingly painful and highly embarassing. i dont go out of the house unless my meds have worked as its not uncommon for bile to just leak out of my bottom and i have no control over it.
Fire chick, watch your weight very carefully. You like myself have to keep our weight up, our bodies can't afford the weight loss. Talk to you doctor about weight gainers you can take. I drink a protien shake every day, just to help maintain weight, especially during a stomach episode.
Thanks jinx for your post. I think you pegged all three feelings about BRD - Excruciating/painful, debililtating, and embarrassing. Very life altering it has been. My doc(s) don't even have me on a meds to absorb the bile. I asked them about it, and they said it is basically a waste of time. If one had said this I might quesion it, but they all have told me this, even the ones I have fired. I am not saying bile absorbing meds won't work, the docs I have seen just don't seem to think it will help I guess me. I feel for you, hang in there. Occassionally there are good days.
Thank you for this post, I was diagnosed with GERD and BRD in 2005. Back then I would go online and try to find information regarding this disease, I would try to find support groups because doctors wouldn't believe me when I told them of my symptoms. I felt so alone. After so many years this is the first time I read of someone else feeling exactly what I feel. Going through exactly the same situations in life. I no longer feel like I am crazy because doctors won't believe my symptoms. I feel relief that I am not the only one, despite the fact I don't wish this disease for anyone else. It's such a horrible disease. I started feeling a little ill in 6th grade and then it worsen when I was in 9th grade and I had to drop out of HS and go to adult school. I lost my friends because I couldn't go out. The first 2 years were the worst, trying to get used to the daily symptoms, trying to make my stomach accustom to the medication and food choices.
I currently weight 100lbs, I am a guy so I'm supposed to be chubby or buff. Being underweight as a male has been horrendous. Through school I was teased a lot, being called anorexic, bullimic, and of having AIDS. None of it is true but people never understood. As a young adult, now 21 years old. I still go through the same problems with society. I get asked by strangers "Why are you so skinny do you have AIDS?" or "You look anorexic, eat something". That hurts alot because if they knew, I have a very healhty diet. I eat very well. I have a team of doctors who have tried to figure out my weight problem and they still can't. I have a theory that since bile is there to break down fats and things that the stomach acid can't break down. My theory is that the bile refluxing into my stomach is burning up all the fact before my body can store it. That would make sense because I don't have any body fat. Most of my weight that I have gain has been through muscle mass. I can't get fat so that people will stop judging me. I hate it but I know this is how my body works and I've become accustom to it even though some days I just have enough of being called names.
At a point in my life I was really deppressed because I had great grades in school, I wanted to go to Columbia University and I wanted to be an Architect. All of those dreams were shattered by this disease. I just tell myself that it was not meant to be. I struggle to finish school and I struggle to find work. It's really depressing at times but I am so happy to be alive. I am so happy that I have somwhat got a control over it. It took me literally 2-3 years to get a hold of this disease to have a nice life.
I hope that ever since your posting on this site, that you've been feeling much better and you've been having less episodes. When I barely got sick I had episodes daily, for 2 years it was hell. But now I have an episode per month.
Efron....here is a monster size hug for you. I felt every word you typed. This condition is miserable and it doesn't help people looking at you and judging/name calling you for things you are not. You can go to Columbia. Believe in yourself, not the condition. Live your life exactly how you planned and dreamed ok? The only difference is like me, you have to work around the condition, because the condition rearranges our lives.
I think people just assume because a person is so tiny, they have an eating disorder such as anorexia or bulemia. If that's not it, they automatically assume aids, or as a rude neighbor put it to me once "I thought you were a crack whore because of your size". I don't know if they are just rude or just so ignorant to what they just said. I dream everyday of my normal weight. I think the docs forget, we need a lot of calories to maintain a normal weight. They tell us to eat more fats and protiens, but they are not the ones suffering from this, and eating no matter how bad we want to eat it, hurts. Last night we had steak and potatoes....yummy, but it was very difficult to get my meal down....and I cried. I wanted that steak so badly. Instead, I had to stop in the middle of the meal and take my stomach relaxer. People just don't realize how lucky they are to eat the way they do, and not have to live with this condition. For you and me? we are remarkable people, because we do have to live with it.
Thank you so much for that. =) It will seriously help me get through it everyday because I know that I am not alone and that I can still follow my dreams. Something that has helped me eating is sitting on a recliner chair, I dont know what it might be but it has helped me keep my food down and it hurts less when eating than sitting straight.
Quick question though, my first job ever that I had. I had to quit because I kept getting sick and my boss didn't understand my situation. I was scared of getting fired so I quit. Maybe you know more than I, but is there anyway the government can protect me from getting fired if I call in sick a lot or I just need a really nice boss? Or how has it worked for you calling in sick or leaving early?
Efron - unfortunately, the only thing that will protect you at a work place is being on FMLA (that I know of). You have to be employed at a company for a year to apply for it. Even that won't save you. I lost my job while I was on medical leave. Even went to my union, and talked to a lawyer. FMLA is good for 12 weeks, and even after that, the employor can find a loop hole (which they did with me) not to take you back. Bosses don't understand, and won't waste their time trying because it costs the company more money if you are on FMLA. The best advice is to try and maintain your condition so you can work.
That way at least you have health care coverage to help when you do have a flare up. If anything, hold your job for 20 weeks if you can, and never quit. If you quit, then your company won't have to pay unemployment. I am not advocating unemployment, but you shouldn't have to starve or not be able to pay for much needed medicine if you have too. I am thinking about part time work instead of full time now. I can't trust my stomach. However, I have a very understanding partner who supports me emotionally on this decision.
I will have to try the recliner idea. :-)
Hi everyone,
I have been reading your comments for the better half of my day today. I am searching for the cause of debilitating stomach pain experienced by my eleven year old daughter. She has had many procedures for abdominal pain, including endoscopy, colonoscopy, capsule endoscopy,upper GI series to rule out malroation, and HIDA scan for the gallbladder. The HIDA scan came back grossly abnormal with functionality less than 5%. The pediatric surgeon diagnosed it as Biliary Dyskinesia of the gallbladder, and wanted to remove the appendix as well as the gallbladder...in case it was chronically infected and also causing pain.
We felt relieved that we had possibly found the cause of her stomach pains. But then after surgery in July 2010, she had the awful problem of diarrhea after everything that she ate. We were never told that this could be a problem. She was then put on Prevalite (cholestyramine)in August to bind the bile salts up. She now is having bad pain up high in the pit of her stomach, as well as in a band formation across her belly bellow the belly button. We altered the dosage of Prevalite down in hopes that maybe this was just constipation, but now she is right back to the diarrhea again and still in pain. I was thinking that maybe it could be abdominal migraines, but it also sounds like maybe bile reflux? These pains make her curl up in a ball and cry, she doesn't throw up from them though. She also has periodically complained about back pain (but her kidneys have been checked and are normal, as well as some referred pain into her shoulder area. She gets frequent sore throats, and I am now wondering if this could be more of a burning sensation...possibly from bile? I had thought that maybe she just gets a dry throat at night, but maybe it is all related.
She also has always had sinus problems (had tonsils and adenoids out at age 4), and I noticed Dragonlady, that you stated your allergies make this worse for you? I was interested in that, and would like to know how this affects you.
I am a bit worried because the upper endoscopy did show a bit of stomach inflammation (pre-surgigal), but what if the bile is now eating away at her stomach lining since the surgery. They prescribed Zantac 150 am and pm, but it doesnt help any. Her stomach makes "gurgly" sounds and she is always afraid to eat anything.
I have decided to take her off of the Prevalite and try Calcium Citrate to bind the bile. Has anyone else tried this before? We are headed back to Cleveland Clinic (this is where she has been treated for the last 8 months) on Friday morning for another go at these symptoms. I am wondering if another upper endoscopy should be done. The doctor told me over the phone to discontinue the Prevalite and Zantac until she can be seen on Friday morning, and try going back on the Levsin for the abdominal pains.
Any words of advice would be greatly appreciated. I feel deeply for you all, and I know how much this affects your lives. I am thankful to read your words of encouragement to one another. I hope to find an answer for my daughter, and it is so frustrating when the doctors seem to not realize how terribly this affects lives. My daughter is in sixth grade, and the school says things like...."You know we DO have restrooms HERE that she could use, she doesn't NEED to be at home". That was a quote from her school principal, and it is now clear to me that most people lack empathy and understanding about digestive disorders unless they've walked the road themselves or with a loved one.
God Bless,
~Lindsay
hi dragonlady! I am from Manila. i had my gallbladder removed a month ago and had bile reflux soon after..Most doctors here think i am crazy.. i am so glad to find this site!
I also am happy I found this site. I have had all the same symtoms for years to the point of gastric bleeding. I had my gallbladder removed in Oct 2009 and I was finally diagnosed after my 7th EGD on Aug 25, 2010 with bile reflux which really isn't a blessing but at least I know what it is and its not in my head. I was put on Carafate (was on it years ago) 3 times a day and prilosec every other day, no relief. Yesterday I started Cholestyramine before meals. I am hopeful this will start working soon. The Mayo site was helpful and I have been down there a couple of years ago for pre Myleodispastic Syndrom (MDS),a bone marrow issue. I work in a very stressful job supervise criminal data entry division for Las Vegas Justice Court. I find my burning and reflux gets worse as the day goes on so stress is a very important factor. I just want my life back. I spend my weekends sick just to go back to work on Monday and it starts all over again.
I plan on reading all of the material suggested in your postings and will try the alternative methods suggested on your postings. I am just glad that I found all of you because you can relate to what I am going through. My husband is supportive, my employers are not. There is not enough information out there on bile reflux. I will check back often and see how everyone is doing. Has anyone had the surgery, just curious?
Hi Lindsay - My allergies are so severe that I have to have steroid shots to stop the drainage that drastically affects my stomach. Not to mention I get extreme vertigo in my ears (which is not bile related, but very debilitating in its own right). Your daughter's allergies could affect the bile since it drains into the stomach whether we want it too or not. You definately want to have that checked out and see if an allergist can control that symptom.
As for Bile Reflux disease, they will have to perform a lower endoscopy to see if Bile is collecting in the stomach and causing inflammation, etc. Remember Bile Reflux Disease is not GERD, but can cause gastric symptoms associated like GERD (burning in the throat). This is because the Bile has nowhere to go if it is collecting and hanging out in the stomach. It will cause gastritis which also can be a GERD symptom as well.
Her stool habits - pay very close attention to her stools. If they are green alot (like every stool for a week), the doctors have told me that is blood, and to inform them as immediately. Loose stools, even watery, are very unpleasant. If these are wiping her out, immediately inform your doctors because she could be dehydrating. If the stools are hard, then medications could be constipating her. This is easily relieved by a mild stool relaxer.
Unfortunately, since there is no cure for Bile Reflux Disease, she will have to learn to manage everything she ingests (medicines, food, etc...). She will have really good days, and really bad days. Encourage all days, and don't let her recluse herself. She needs other kids to play with, to help her feel normal, because if she does have BRD, it can quickly depress her. Being sick to your stomach every day really drains a person.
You are very correct in your thinking of people just don't understand this unless they "walk the road themselves."
One thing, I am kind of trying an experiment on myself. So far I am having really good results (fingers need to stay crossed). I was asking alot of questions at a GNC recently about probiotics. My doctor kept telling me to eat yogurt....well that's the kid in me, I turn my nose up to yogurt...yuck! So there had to be another alternative. Since I have become a regular at what seems every pharmacy in town, I swear I know them all by name. I got to thinking, all this medication is crazy, and some have to really harm more than help. Carafate made me sicker than better, so I stopped taking it as soon as my doc double dosed the Prilosec. However, because of the sinus infections and being allergic to chicken/duck dander I can't take some medications and especially not a flu shot without possibly dying. Therefore, some antibiotics are very strong and one imparticular causes a colon condition. My docs had prescibed it 4x's in one year. Ok...my thinking, I need some good bacteria in my colon. Ask you doc if maybe your daughter should try a probiotic to help relieve her bowel movements. Keep in mind, if she is diagnosed with BRD, you will get to the point you will try anything to relieve the pain and symptoms, OTC and prescribed.
Unfortunately employers and schools are very indifferent to this condition. They don't have it, and the medical community doesn't promote it. There will be doctors who you will feel are completely looking at you crazy, and it's all in your head. It is not, and none of you are crazy. The condition is real. If the schools keep pressuring you about your daughter, you might look into things like home schooling or tutors. The entire point is to relieve some of the stress of your daughter. She has enough to deal with. I wish this on no one. I hope your family is lucky, and the cause is something else that can be fixed.
I have a damaged pyloric valve. No surgery will help me, and I have heard horror stories about the surgeries after the fact. Remember, you are not alone. Your daughter is not alone. The good news about the probiotics....it's been 2 days, and I have kept my food down...every meal. I am very excited! The first time in 3 years. You don't know how badly I want this to help me, maybe it would help others as well.
Hi Cathie - This condition sucks!! (Just keep reading) and I wish the medical community would start realizing it, and treat it more seriously!! Because I am really sick of this condition. (Ah! that felt good...you try it now, no seriously you'll feel good screaming about it from time to time). I think we all need to start screaming those words until someone hears us. Really....because you are right employers are not supportive, and at times you will find yourself sitting there crying and mad, not to mention nauseated and feeling completely alone (even though you have a loving supportive husband). Why? because when we think we have control over this, we don't and another episode flares up and we feel miserable. My supportive boyfriend deserves a saint hood. However, he even states from time to time, "I just don't know what to do to help you." Or the other day his stomach hurt miserably for him, and he looked at me and said "I don't know how you can live like this every day, my God!" The point? No matter how much he supports me, he doesn't have to live through this, so it does make him feel helpless from time to time.
Read my post to Lindsay about the probiotics, they might help you too. Ask your doctor though, because that's what I do with anything I think about taking over the counter. What caught my attention most in your post was the question about the surgery. I am assuming you are referring to where they redirect you stomach so it drains into your colon? I asked my doctor and gastro doctor about this topic. Surgery for me will not help and might increase problems. I have heard nightmares about after the surgery as well. However, I did ask about the bile absorbing medications, and they also (not to mention the other doctors, even some I fired) stated this doesn't really help either. Why? Because we need bile to digest our food. It does seem to help some people so, if it helps you then do take it.
Stress is your worst enemy with BRD, you might want to see if your doctor will prescribe something to help with the stress. I don't advocate the use of these medications, but if all else fails in the de-stressing effort, you might want to persue this avenue just so you are not putting so much stress on yourself during work hours. Stress does horrible things to a BRD stomach, even when we think we are not stressed. Think about it though, if you can't keep a meal down, at some point you'll get stressed out everythime it's meal time, because you are terrified will you keep that meal down? Will your stomach go into fits? Are you going to feel nauseated even if you eat that piece of bland bread. Then you get stresed because, ok you got that meal down, but now the second half of digetion is making you miserable, and what if you don't eat? Then you have that burning sensation, and pain. You want that taco! I want that taco....ugh. Stress. Do anything you can to help relieve it. It's really up to us to find ways to get our lives back as best as we can since there isn't a cure for this miserable condition. Doctors can only treat the symptoms. They don't get to go home with us and see how miserable we are. As Lindsay put it quite well "They don't walk our road." because if they did, doctors, employers, schools, etc... they'd all think differently about this condition. Good luck hon, keep us posted how you are feeling as well. You are not alone.
Five Steps to a Healthy Gut (and a Healthy Body!) by Dr.Mark Hyman
Follow these five simple steps to begin rebalancing your gut flora.
1. Eat a fiber-rich, whole foods diet--it should be rich in beans, nuts, seeds, whole grains, fruits, and vegetables--all of which feed good bugs.
2. Limit sugar, processed foods, animal fats, and animal protein--these provide food for unhealthy bugs.
3. Avoid the use of antibiotics, acid blockers, and anti-inflammatories--they change gut flora for the worse.
4. Take probiotics daily--these healthy, friendly flora can improve your digestive health and reduce inflammation and allergy.
5. Consider specialized testing--such as organic acid testing, stool testing (new tests can look at the DNA of the bacteria in your gut), and others to help assess your gut function. You will likely have to work with a functional medicine practitioner to effective test and treat imbalances in your gut.
Dragonlady, I am so happy to hear you found something that is helping you have some good days. You deserve many more good days for how you are helping so many other people. Blessings!
Thanks Woody - I am having mixed results with the probiotics. Yes, it helps with digestion after the stomach. Which seems to relieve some discomfort and help me get through a meal. However, the wicked bile still remains. Sigh... I hope I am helping people. On my worst days, it is such a comfort. Because some days, I just need that little bit of happiness. The probiotics might help some, but I know it's not a cure. I don't mean for that to sound pessimistic, it's just the truth with this condition. Most days, I am just so tired of having BRD. The good news....I have gained some weight back. So that makes me very happy. I just want to be normal again. I wish the medical community would hurry up and figure something out, so we all can feel normal again. It's my greatess wish for us all. (Yes...I am sad right now...I am sorry)
Hi Dragonlady and Woody.... I had my gallbladder removed 13 years ago and over the years suffered what seemed like Gallbladder attacks! Nothing major tho'. Two years ago I started having trouble with my bowels, pains in my hips and in right arm pit. After a colonoscopy - I was told it was IBS and given amtryptline. I've had a really stressful year so far and in June 2010, I was really really sick - vomiting bile non stop for 10 hrs. Ever since then I have felt so ill, have lost over 30lbs and thought I was losing my mind. Starting getting constipation/yellow diarreah and acid symptoms. I could not eat. I was put on omeprazole which did not help much. I had a endoscope two days ago and have been told I have bile reflux and moderate bile lying in my tummy. My consultant told me it was very difficult to treat and I am to take sucralfate. I have read these posts and am now so depressed.. I cant stop crying thinking I will have to live with this forever and it may cause cancer. My husband is at his wits end with me thinking I should just start eating now and get on with it. Dragonlady, you are an inspiration and Woody - you give me hope.
Hi Diane - Just remember you are not alone with this condition. It does get rather depressing, because it is so miserable to experience. Every day is a constant battle, because we need bile to digest our food. We can live without our gallbladder, but not the bile. The key is to try and keep your chin up. You will have bad days, and good days. I think I still have my days where I am really mad they can fix most anything, but why not this? So many different theories, treatment ideas, and in some cases surgeries, have helped people with this condition. However, medicines are not cures, just management. Surgery could do more harm, and treatment ideas are unproven. I am being a guinea pig lately seeing how the probiotics will help. They have mixed results. True it helps with the colon, but the bile in stomach still remains. The one positive I have noticed is I have been able to eat a meal in it's entirety. Don't know how long that will last, but OMG, it feels good to eat. Always remember....BRD is not an eating disorder, so don't let people trick you into thinking it is or make you feel that way ever. It is not Anorexia or Bulemia. Your husband is feeling helpless for you. Talk to him about this and see if there are ways for both of you to take small steps dealing with this. My boyfriend does small things such as just making a bland egg or toast. It is small, but he feels he is helping me eat, and small meals don't hurt as much as a full meal, especially during an episode. There are other things he can do as well, so talk to each other, but make sure he knows the best feeling is when you are crying and he is there for you. You need the emotional support more than anything. He could also keep a mental note about certain foods that will hurt you. Garlic is awful for me. My boyfriend pointed this out without me realizing it. Rapid weight loss is a given, you have enough to worry about trying to manage a routine, medications just to feel half way decent, the depression that eats away at you because you feel miserable, alone, and helpless. Try a weight gainer with muscle builder (if you are not lactose intolerant). It helps coat my stomach, and I feel like I have put some nutrients back into my system. I was told to beware of ones with alot of sugar content in them, so check with your doctor and local GNC to see which ones would be best for you. Lastly, pamper yourself. You deserve to feel normal. Do little things for yourself to cheer yourself up. The doctors might prescribe a mild anti-depressant to relieve some of the depression but if you don't believe in these, then you need to find ways to de-stress yourself. Stress is BRD's worst enemy. I take Prilosec 2x's a day. Though I don't have GERD, which is mainly what these medications are prescribed for, it does help with the gastritis associated with the inflammation the bile creates when it is backed up in your stomach. Talk closely with your doctor to see what is best for you. I don't think about what could happen, such as the cancer, pancreatitis, etc... Try to focus on feeling good each day. It's a struggle in itself.
Also- remember (back to the husband), BRD is very trying on a relationship. Support each other, and talk about this, you need to support him as well because he is going through this with you and doesn't understand it, because he doesn't experience it. My boyfriend says "It sucks for him too, but we get through it the best we can." His biggest upset is the helplessness, because he can't make me feel better. He can't give me a tylenol and it will go away. He can't give me pepto bismol and make it go away. Therefore, make the most of the good days, and hug alot on the bad days, and remember You are not alone.
Hi Dragonlady - thanks for your reply. Going to the Doc tomorrow so will see what she says. How do you cope everyday? How do you manage holidays? We had booked to go to Florida next year and I'm panicking about this already.
What happens to the bile in your stomach - does it just leave naturally? I've no idea about this.
Do you know if acupuncture or any natural remedies that work?
Hi Diane - well, some days I cope alright, bright and cheery, other days I just simpily break down. That's what it's like for me. I try to manage each day like it is any other. Of course there are still episodes, so I deal with them as best as I can. Everywhere we go, I try to make sure I have the medicines or remedies that help me feel better. One trip I had to have my doctor call a prescription in out of state. I just try to manage. It doesn't always succeed, but at least I am trying. Don't change plans for fear of an episode, you'll make yourself crazy with worry. Then at one point you will fear doing anything. I know, I have been there. Stay focused on things you love to do that make you happy. It's your biggest reward to yourself.
The bile hangs out in my stomach like a backed up drain. It can cause all sorts of problems, but for me eating every bite of food is like a punch in the gut, and a hard punch. When my stomach spasms, it also wreaks havoc on my colon causing it to spasm as well. It almost feels like a knife in my liver sometimes, and the pain is excruciating. It eventualy leaves my stomach, but the process is very slow since my pyloric valve is damaged. If I get constipated then I literally am poisoning my system because the bile has no way to exit my body. Not to mention the fecal matter backing up. This might not happen to you, it's what happens to me. I will not endorse alterior methods, but I have tried some...because I want to feel better too. Acupuncture I do not know about. To me it seems like it would just relieve some of the pain, and maybe relieve stress? Natural Remedies you have to check with your doctor first, because they might interact with medications you are taking. I check with my pharmacist as well since they know the chemistry of things. Be very careful and knowledgable about what you put in your body. Something that might work today, may not tomorrow. Multi vitamins will dry your fecal matter out which can lead to constipation, sometimes severely. Certain medications can do this also, such as Bentyl. Know everything you put in your body, what is prescribed, or offered in suggestion. Good intentions can still hurt you. Foods can too, but remember even a bland meal with bile in your stomach is not going to sit well. I am allergic to sulfa. I love garlic, but found out garlic has sulfa in it. Ironically, everytime I eat garlic, I get really sick. So now I have to watch my spices, even all spice. I also can never take a flu shot or it will kill me. This is because I am highly allergic to chicken/duck dander. Though this is not BRD, it affects my BRD, because some medications are made of chicken dander, and my doctor and I needed to know this so certain medications would never be given to me. This makes it hard to prescribe things sometimes, but knowing what goes in your body will help you alot.
Hopefully your doctor will have some helpful suggestions tomorrow. If not start asking questions and make them answer you. You deserve to feel better, and get their opinion as well about how you can learn to live with this. I can not begin to tell you how many times I have cried and yelled at my doctor. Hugs hon
Hiya Dragonlady, its really good to speak to you.
Just been to the Doc and have taken my first Sucralfate 1g, twice a day. Also have to take an anti sickness tablet 3 times a day as I feel sick when I eat. She is concerned about my weight loss and says the bile needs food. I am generally constipated now. Dont know if this is because I'm not eating. I also have to take omeprazole and then amtryptline for my "IBS" - I'm now wondering if this is IBS or has it been my bile reflux all along.....I hope I dont have to take all these tablets for ever - but if it makes me feel better....
I'm going for some Reiki to hopefully manage my stress and anxiety.
I really appreciate all your kind words - its really been a help.
Hugs back xxxx
Hi Diane - You want to hear something that just hit me as amazing? Not one doctor has prescribed amtryptline for my supposive IBS. Not one. I have been told to take a mild laxative when I feel "backed up". I have read so many people taking this. I have a sparked curiousity now. What is this curious medicine? I must find out. I did chat w/ my cousin yesterday. He is a medical doctor. We talked about my condition, and I asked his opinion on some of my meds. Carafate/Sucralfate was admitted to me that the results are almost sometimes, nothing. Which I was already feeling. It might work for you though. Just monitor how you feel while taking it. If you feel sicker, tell your doctor.
Weight loss is a problem. Did you discuss a weight gainer or ways to get nutrients into your system with your doctor? Some of these will help keep your strength up as well. Especially when you don't want to eat. Yes bile needs food. That doesn't mean we can get that food down. IBS seems to be something that pops up with Bile Reflux, but its 2 different conditions wreaking havoc on your body. Your doctor is trying to treat your symptoms so you can function. That doesn't mean everything they prescribe will work or keep working. Our bodies change daily. The bile in your bowels is not happy either.
Let me know how the Reiki goes....kind of interested in this.
HI DRAGONLADY FOR THE POSTS...
IM STARTED FELLING SICK AFTER MY GALLBLADDEE REMOVAL...BEFORE 7 MONTHS...
I DEVELOPE MANY SYMPTOMS SINCE...
DIZZINESS,LIGHTHEADED ALL TIME...FELLING I WILL COLAPS
FATIQUE
WEAKNESS
BLOATED...FULL WIND...METHEORISM
SLEAPNESS AND ALWAYS TIRED
DYAREAH EVERY DAY
NAUSEA FREQUENTLY
DRY MOUTH AND THROAT (ESPACIALY IN THE MORNING)
METAL TASTE IN MY MOUTH OR LIKE SUMPOR
...AND THE WORST FROM ALL IS PROBLEM WITH BREATHING (LABORED BREATHING) AND FELLINGG TIGHTENING IN MY CHESTS ALL TIME
IM VERY DEPRESSED BECOUSE DOCTORS DONT KNOW WHATS WRONG WITH ME...I CRYING EVERYDAY AND THINK I WILL SLOWLY DIE...
MY LUNG FUNCTION IS OK...SpO2 is 98%...AND OTHER TESTS ARE OK...
I THINK BILE/ACID REFLUX CAUSES MY PROBLEMS...BUT I DONT KNOW WHAT TO DO...
I EAT SMALLER MEALS WITHOUT FAT,SUGAR...ETC..
MY BED IS ELEVATED...ETS.ETC...
I TAKE MUCH MEDICINE(CONTROLOC,RANITIDINE,REGLANE,PY LOMID,RUPURUT...) BUT IT SEEMS NOTHING WORK...
IM SO TIRED OF SICK FELLING...TOMOROW I WILL GO TO DO SOME BLOOD TESTS...MY DOC THINK IT MAYBE SJOGREN SYNDROME...
BUT I THINK BILE/ACID REFLUX....MAKE ME TROUBLE,...JUST WE MUST TO FIGURED HOW TO FIX OUR HEALTH...I 31 YEAR AND TOO YOUNG FOR THIS TOO MUCH PROBLEMS...
SOORY BECOUSE MY ENGLISH...HOPE YOU WILL UNDERSTAND ME...
BEST WISHES FOR YOU AND ALL...
Hi Azra30- you need a hug. Especially because you are crying so much. Keep in mind that after a gall bladder surgery you can have stomach symptoms like Diaherra and pain for months. My doctor at the time told me this is your body recovering from the surgery and adjusting to not having a gallbladder any longer. However, you should not be in this much pain. Do have an endoscopy done. This will determine if you in fact do have bile collecting in your stomach. The doctors will also be able to determine if there is any pyloric valve damage, or liver problems.
Some of your symptoms could be gastritis as well, with the burning in your throat, etc... Bile Reflux is miserable, so hopefully your doctors can find out what is going on, and you will be blessed and not have Bile Reflux.
Another thing to look at is your medication list. I did. My God, what a list. Some of the medicines that are supposed to help the stomach sometimes do the exact opposite. Many prescribed to you are prescribed to Chemotherapy patients. Almost all of them are to treat GERD, commonly known as Acid Reflux Disease. Though these medications are helpful, they do not treat bile. They treat acid. You might want to go over this massive medicine list with your doctor and trim it down, to something that is reasonable for you to take. Many of them have Nausea, vomiting, diarrhea, constipation, dizziness, and depression listed as side affects.
Also, I looked up Sjogren Syndrome. I am guessing your doctor is considering this because it usually accompanies Lupus, which is is an immune disease and the only symptoms that seem to be Sjogrenn's is dry mouth and no tears. I am guessing if you have been crying, you have plenty of tears. Some of the symptoms you mentioned to me, might be steering your doctor towards ruling out Lupus.
The one thing you need to do is get the endoscopy done along with some blood work. The blood work will rule out pancreatitis and liver disease, etc... The Endoscopy will let the doctors see with a camera what's going on in your stomach and lower Durodeum.
Do not loose hope, because feeling sick all the time does make you feel depressed and hopeless. Bile Reflux Disease does not have a cure, so if you are diagnosed with it, you will have to learn to manage it. There will be very bad days, but cheerish the good days. We are here for you. If only to give cyber hugs, or a word of encouragement. I can't say it enough on here. You are not alone. Best wishes for you, and please let me know how things are going for you. PS...your English was fine.
Thanks for answer Dragonlady...
I had endoscopy 2 months after my gallbladder removal and dr told me my stomac was full bile...@ mild cascada
I know that drs give me medicines for ACID reflux(reglan...nexium...pylomid...rupurut...etc)...here (Im from Bosnia@Hezegovina-Sarajevo)...doctors dont know much about bile reflux...
At first time...most of them told me im crazy...but i know im not...:)))...they put me on xanax...for anxiety
I have Crohns desease too ...but i never been sick before my gallbladder removal...and was very active
My surgery (gallbladder) was 35 days after birth my 1-st child...I was so happy before my gallbladder removal...
Soon i will go to my gastroenterologist...and i will ask him more about bile reflux...last time he prescibered me questran (we dont have that medicine here,but my cousion send me from Norwey...)...questran doesnt help me...yes for dyareah but not for my bile reflux...
I have all time sensation...lump in the throat...especialy right side...of my neck...(throat)...
I had 3x abdomen ultrasound after my GB removal...last time dr told me that i have fat liver (not so much,but fat)...
Dr put my on diet food (not fat,without sugar,etc...)...i have dietary food but im still fell very nauseas...bloating...dizziness
and very sleepness@chronic fatique...
My friend told me that i must use probiotics...like...acidophilus...lgg...activia...
Here i hear for medicines for bile reflux...ursofalk ...and i will ask my dr about ursofalk...but my problem is...i have dyareah...and ursofalk could be contraindication for peoples with dyareah...
I think bile make my mouth and throat dry (fell metalic taste/sumpor taste)...not sjogren...but we will se...i had much saliva before my GB removal...and now... too much tears ?))
Dragnolady...im sooooooo tired of sick felling...
I hope that we found way for bile reflux...(how to treat it)...
For the next time...i will share information about bile reflux...
Hahah my english is so confused...sorry ...hope i will to learn..hugs
Hi Dragonlady...Hope your having a good day....I've felt very sick today (I usually feel sick all day anyway)and have a horrible sour taste in my mouth along with my white tongue. This taste alone makes me feel sick. The Doc thinks its the bile that is refluxing into my throat. I was chewing gum for a week and what a difference this made. I felt half human but then I read this creates more acid!
I think the Doc gave my the amptrptyline 2 years ago more for the anxiety that was coming with the IBS and it helps me sleep at night. I think it is a slight anti depressant but not addictive.
My husband was trying to make me eat cheesecake tonight - oh I was so tempted!!!
I will let you know about the Reiki - hopefully it will stop me crying all day. x
Hi Diane.... Hey! I want that cheesecake too! :-) See what he started? LOL
Is the sour taste coming after taking Sucralfate/Carafate? I noticed a white tongue while on it. Though I have been off it 2 months now and still have that coating. I am having a really great day...despite my stomach being bad. Hope your day gets better.
Hi Azra30- I had 3 scopes before they diagnosed Bile Reflux Disease. Unfortunately, the doctors don't understand it here in America either. So you are not alone in your thinking they look at you crazy. You aren't crazy. The symptoms are real. They just don't know what to do with it. A treatment might work one day, and not the day. If the doctor has you on Xanax, I would continue to take it to help you sleep. I do not endorse any medications on here, but if it will help you sleep, I do endorse rest. You need it. Your body is going through chaos right now. I wish I could write more, but I am not feeling well, despite having a great day mentally. I will check back in a little while if I can. Chin up. :-)
Hi Dragonlady...i was very nausated all day...i was nausated before taken any medicines...for me....nausea....labored bretahing...dizziness...and lump in the throat are the worst symptoms...and dry mouth too...i dont have pains...just mild pains sometimes on the left side...i think thats maybe stomac or pancreas...
My opinion is...that in some patients have malasorption nutritions,vitamins.minerals..from food...this may be cause...dizziness...too...
I have worked vitamins-minerals status before 2 months...and test show...extremly deficiency B-complex vitamin...specialy B6...B9...
Now i take vitamin B with my meals...
i use to have eaten an aplle every day...especialy evening...soon i will try to use...tibetan milk mushroom...i think this could be help a litlle...
i will try to eat more fresh food...fruits and vegetables...i dont have problem with sleapness...im sleapy and tired all day...:)))
maybe our bodies are develped food alergies...im scared about celiac desease...i eat the bread from the buckwheat...i have not tested for celiac desease or food alergies...
are you active??you walk??i cannot will take a walk because of dizzinesses...and im very fatique...
i will write again...now i must to sleap...5:35 here...in the morning...bye..and hug..
Dragonlady, thanks for your reply. I appreciate the support. Well the Cholestyremine did not work. It made me worse. So now back to square one. My doctor had me do a fleet enema today and put me back on carafate 2 times a day with milk of magnesia every other day, prilosec every other day. So far not working and I wasn't plugged up. He said if not better in week then he wants to put me on reglan. I just got done reading the side effects of reglan and its scarey. I have been doing probiotics for the past few months with my doctor's permission and I do not eat sugar. Even the most bland food in about 1 hour after I eat the reflux starts to the point of vomiting. I am very discouraged as to how to proceed. Any physical activity makes it worse. It just wears on you day after day!
Hi Cathie - I know what you mean about the "wearing on you day after day". I still try to be as active as I can. Even if it is just a walk to the mailbox. There are alot of "Square ones" with this condition. It's probably what I hate the most. The basic fact is we can't live without bile. We need it, there has to be a happy medium to co-exist with it. I must admit, I only keep the carafate on hand when I have to have it. I just don't like that pill, and I really don't see a benefit when taking it. Which seems to be a general concensus about it. I did use Reglan once (and yes the side affects list scared the heck out of me too) and it knocks you out, but with most medications, the results didn't help me, or not for long.
I have read alot about diets on here. True we should eat healthy, but like you just wrote and I have mentioned, most bland food hurts too. There are some days bread is the only thing I can eat, and it makes me mad, because I really want that steak or potato to go along with that piece of bread. I am only human, so I will have that piece of cheesecake, or bowl of cereal loaded with sugar (not recommeneded if you are diabetic). My mind set is spicy, bland, any.... the bile is still going to touch it when it hits my stomach. I am not going to go out and have those spicy nachos though....that would be bad, but if I can have those nachos in a less spicy variety...I will. A girl's gotta eat.
I am assuming the enema was to clean you out, just in case you might have had some blockage going on. Sometimes I wonder what the heck the doctor was thinking? Then again, having this the past 3 years, I have had alot of tests I wondered the very same thing about. Not to mention the same thoughts on the medications. Please don't loose hope. You are not alone, and maybe together, we can all find a way to live each day alittle better. PS... my doc has me on Nexium 2x's a day. Though it's not my miracle cure, it does help alittle. If it gets really rough, I then take Maalox as needed. Sometimes it helps, other times not, but at least it helps me function most days. Phengran is another "on hand" medicine. It helps with nausea, but I only take it when I have a severe case of nausea. Ask your doctor about Bentyl. It might help with some of the cramping and spasms in your stomach. I am still testing the probiotic. I still have to say it has mixed results. The trend I am seeing is that the medical community is trying to attach this condition to the bowls. However, if you are having normal stools, and still have bile, then common sense tells me the bowls are not it. They are just affected by the bile. So all the "cleansing" in the world is not going to stop bile production. Though it might help with IBS symptoms if you have them.
Same with the mental aspect of it. Have they not figured out we are depressed because we feel so miserable? Let them try living like this for a month and see how their mental state is affected. Stress is our worst enemy, and sometimes the doctors are adding more stress than they realize in their attempts to help us. Do something fun for yourself after a doctor's visit. Whether it be a trip to the mall to buy a new outfit, or some great smelling bath salt. Start pampering yourself with little things you love. I can't say it enough....you need it. The little things will mean alot (just don't max your credit cards out...that'll add stress). Hugs for you.
Hi Azra30- I am not a medical doctor, but I do believe the only things on your left side is your spleen and colon. You might have some blockage in your bowls if you are having pain on that side. So you might want to mention it at your next visit. Keep in mind you can eat healthy, but even the healthy foods will hurt you if you are diagnosed with Bile Reflux Disease. Bile shows no mercy to any type of food. You could eat a piece of bread and still have an episode. Though I highly recommend staying away from spicy food. Why add to the misery? Talk to your doctor about vitamins. I found out the hard way that these can sometimes dry you out in your colon. It was a very nasty experience to go through, and I didn't realize I was so blocked that I was literally poisoning my system. Now, I haven't given up my vitamin, but my doctor did tell me what to do so if I backed up again, I could relieve the situation.
Also...here is another really good point my boyfriend told me yesterday. I just had an episode. He stayed home and made sure I slept all day. When I asked him about it he stated, "I wanted to make sure you slept." Just because we are tired does not mean we are sleeping. This condition is exhausting, I am always exhausted. So when we finally do think we are asleep, we might not be sleeping at all. We are stressed, we hurt, we are nauseated,we take alot of medications; as he pointed out, the tossing and turning is unreal sometimes. That is not sleep.
Yes, I try to stay active. I can't go run a marathon, but I try to at least walk everyday, even if it's just to my mailbox. Maybe I am stubborn, but I just can't resign myself to sit on my couch each day and feel sorry for myself anymore. I did that already, for an entire year. I was so angry and depressed about this condition. I still have my days, but I try to make the best of them now. Even if my small victory for the day is... the mailbox. I am not saying go run a marathon, but set small victories in place for yourself and give yourself a pat on the back for everything you do accomplish. Each day I ask how my boyfriend's day went, and in turn he asks me. Mind you, he is healthy and can run that marathon. However, no matter how boring my day might seem to him, we smile. Even if it was just getting up out of bed to answer the phone. He knows I am in pain, he knows the days I can have. Even over exurting in little forms can have an affect. What I accomplish are small victories, not for him, but for me. If you want to walk, but feel dizzy when walking, take it at your own pace, and with someone who can help you. Not only are you not alone, but you'll have good company with you, and help if you need it. :-)
Hi Dragonlady... how are you? And hi to Azra30... Azra, like you, I dont really have too much pain just naseau and dizziness and it takes a lot out of you. Having to live like this 24 hrs a day - 7 days a week!!! Been on sucralfate for 5 days and not feeling much better. Dragonlady - do you know how long it should take before you notice a difference? I've had my sour tongue for months - long before any meds....Went to try the Reiki and done a lot of breathing etc. Felt good after it and have not been crying so much so I will continue to try it. Going to try a nutritionist too - will try anything... Have work for the next three days - that's a real effort, must admit. Be in touch soon....
HI DRAGONLADY...I EAT HEALTHY FOOD...MUCH FRESH FRIUTS...BANANS,APPLES..(NOT CITRUS)...ETC...
YOU ARE VERY STRONG...PERSON...(DRAGON LADY :))...YOU WALK...I CANT ...ONLY WITH MY HUSBAND...SHORT...
IM TRY TO FIGURED WHAT MAKE ME SO DIZZY...???
I HAVE BEEN DIZZY BEFORE USE MEDICINES...I TOUGHT ...GASTRITIS...BUT MY ENDOSCOPY SHOWS ONLY BILE REFLUX...NOT GASTRITIS...
MAYBE BILE LIQUIDS HAVE TO MUCH POISON(TOXIC)...???I DONT KNOW REALY...
YOU NOT DIZZZY???WHATS YOUR MAINS SYMPTOMS???
I WILL ASK MY DR WHAT CAUSE DIZZINESS...
I FELL LIKE IM 100 Y WOMAN...JUST HAVE FACE AND BODY LIKE 31...AND TOOTH TOO :)))
HI DIANE...WE ARE SAME...NAUSEA...AND DIZZINESS...SOUR TASTE...AND I HAVE DRY MOUTH TOO...CRYING TO MUCH...IM NOT STRONG LIKE DRAGONLADY...
WHEN HAD YOU GALLBLLADER REMOVAL???DID YOU TALK WITH YOUR DR WHAT CAUSE DIZZINESS???
I HAVE PROBLEMS 7 MONTHS WITH BILE REFLUX???YOU???
I FELT GOOD ONLY 2,3 WEEKS AFTER GB REMOVAL...I HAVE DIAREAH TOO...BUT I TAKE QUESTRAN...
Hi Diane - The only difference I feel now compared to 3 years ago (with the onset of this condition), is the stomach spasms aren't as strong like they used to be. Other than that I don't notice much of a difference with medicines and daily life. The pain and nausea are always with me. Dull, numbing, there. I wish I could say the Sucralfate will be the miracle medicine, but having taken it off and on for 3 years, I just can't jump up and down about it. It has however helped alittle during bad episodes. I wish that sour metal taste would go away too. You wouldn't believe all the toothpaste and mouth wash I have tried. I don't like living like this 24/7 either, it does take it's toll on you. Thank you for saying I am a strong person. I don't feel that way most days. I too lay in bed some days and just cry my heart out (especially when I have an episode and drop 20 pounds in nothing flat.) I think if I didn't have such a wonderful support system (my bf) I would be an emotional wreck. Get those hugs you need (my bf calls me a hug sponge....gotta love him!). You deserve them and they feel great. I hope the Reiki goes well for you...I seriously am thinking about trying this... what a great idea! PS...keep in mind that before you spend a lot of money on a nutritionist, no matter what diet they come up with, it's still food. So the Bile will still react. I am not saying not to see them, they have some good ideas. Just don't get too excited, even bland toast reacts in our stomachs. Some days I wish this was like GERD, at least then diet can be influenced. With BRD...it can't. PSS.. I don't think the probiotic is helping either, except to keep my meals down. Then again, that might be a small victory.
Hi Azra30- Here's a wild thought about the dizziness, Has your doctor checked your ears? Do you have allergies you suffer from? Reason being, I get extreme vertigo from my allergies. There is so much fluid on my ears at times the doctors are amazed I can even stand up. Look at other symptoms affecting you (even little ones) because they can affect your stomach as well.
It took about a year after my gall bladder was removed to feel "normal". I had the bile, the diarreha, etc... The doctors stated at that time it was just my body readjusting to not having a gall bladder. It seemed reasonable thinking since the next 8 years I felt fine. Then this all popped up and my life has been upside down ever since.
Everyone is different, so you have to really pay attention to your symptoms and get answers from your doctor(s). My dizziness is from my allergies, my allergies drain into my stomach and wreck havoc. Another person might have severe constipation, which will wreck havoc on their stomach and colon. Others, just have the stomach to deal with. Any way you look at it, the stomach is affected in some manner. I don't know if Bile is toxic. It does seem to do alot of damage, and we can't live without it otherwise we couldn't digest food.
Thank you for thinking I am a strong person. I don't consider myself that most days. I guess because I have had to live with this for the last 3 years now. I am at a place in my heart and mind, where I don't want to feel alone with this condition any longer. I also don't want anyone who suffers from this to ever feel alone either. Those were my biggest tears. I can not express how incredibly alone I felt when I first wrote this article. I cried the entire writing of it. If I have to thank anyone? It would be all of you readers, and brave souls who have posted comments. It gives me hope, and hopefully some hope to you as well.
hi dragonlady...and thnaks for the answer...I have no idea stood lies at the bottom of my dizzinesses.i was by the doctor for ears and this O.K.. has,nt worked alergo tests,maybe after the operation have developed celliac desease.i have the intention that do alergo tests.this is really difficultly has become thiner, we pass in the suffering and tears.but we must try to found some solution for BRD.this is not cancer but has are tricked the symptom.i think that doctors little deal with this problematics therefore hundred have no full patients with BRS.i will look for feedbacks from my dr around brd.
where the happiness that has acid reflux. more easily for treats .i from medicines take rupurut for the acid,questran,rudakol and salofalk for the dyareah,espumisan for the puffiness/bloating and xanax for the calm.what you think whom medicine is along your opinion best work for BRD?i hear am for carafate,but yet has not taken this medicine.or ursedeoxiholic acid??? here i fell much alone,...i have great husband and my 8 moths doughter/baby...they make me happy...they not understand me but they love me...i hope that somwhere soon we must found answer...for BRD...
i wish that u fell great/without nauseas and pain...i wish good days all of us...wish to enyou in life...like before...
dragonlady...did you try natural juices...???here much people drink natural fresh juice from fresh cabbage for pain stomach/ulcers...etc...a drink fresh juices from aplle,carrot and other fruits...i dont know if this help for bile reflux...but for my blood is very good...
i drink much yoghurt too...like lgg,activia nad other...
im not tiny...im litlle overweight...i have good apetite (only one positive thing with my BRD)...:)))
have u chest pressure or throath pressure/like sufocation felling???i have all time lump in the throat and chest pressure felling...this make me very nervous...its very iritating...
Hi Azra30. I had my gallbladder out 13 yrs ago and had some sickness afterwards and pain attacks. Then out of the blue this year, I got BRD. I asked my Dr about the dizziness and she shrugged her shoulders - said maybe cause I wasnt eating much!! I've not tried natural juices apart from Aloe Vera juice which was ok but I dont know if it made any difference. I cant take yoghurt - it bloats me bad. I have chest pressure and very sore throat at times. Its the acid taste in the mouth that's the worst. How do you cope looking after your baby?
Hi Dragonlady, hope your having a good day...I had my second session of Reiki today. It has really helped with my anxiety and depression. I have not been crying as much and although it wont take away the bile problems - i hope it will help me through dealing with the depression and stress. I told the Reiki lady!! I felt I had grief to work through and she asked why grief...and I kind of tried explaining it like - grief that this is what life's going to be like now and wanting my old life back.... just need to deal with my new one. Have had a few good days and a few terrible nights. Had chicken with breadcrumbs one night and felt miserable. I just want a Snickers Bar!!!! Try the Reiki - there's a lot of relaxation and meditation which is no bad thing.....
Hi Azra - I agree the world (doctors, insurance, people in general) must take this condition more seriously. Until they are afflicted with it, they have no idea how horrible BRD is. How not only does it physically hurt you, but it weighs on your mental health as well with depression, anxiety, loneliness. They don't understand that we get tired of being sick, tired of watching our families look at us helplessly, get tired of doctors poking us, and sometimes treating us like hypocondriacs. We are people, human beings who have lives, family, careers, but most of all feelings. They do need to find something that will help us. Like you, I am tired of feeling this way.
I have tried yogurt and changing my diet. None of these helped for long. You have to remember, bile digests our food, so no matter what food or drink we consume, it doesn't matter if it's spicy, bland, or healthy. Bile will break it down and digest it no matter what it is. The websites that do have alittle information on BRD have got one thing right : Life style changes are not that affective. So what helps you one day, may make you sick tomorrow.
I have had shortness of breath. I started realizing I was holding my breath alot. My doctor put me on an inhaler (to use as needed), but I think that it was more for my allergies. I don't experience the acid reflux in my throat unless I eat something with garlic, or it was spicy (sometimes you can't control this if you are out eating at a restaurant and think you ordered something bland). My condition is more my lower stomach where the bile sits. This in turn causes severe gastritis with inflamation and stomach spasms. When the stomach spasms, it also makes my colon spasm. My BRD is due to my pyloric valve being damaged, so bile backs up in the stomach all the time. It always feels like a knife twisting where my stomach and liver meet. This pain never goes away. Other things can contribute as well (that's why I asked about your ears). My allergies get so bad, it drains into my stomach, and affects my ears (I get severe vertigo), plus awful migraines. I am not saying allergies are part of BRD, but they affect my BRD in horrible ways. That's why you need to pay attention to every little symptom. It could affect your condition without you realizing it. If the acid reflux medicines aren't helping the "Lump" feeling in your throat, it is time to start questioning what might be causing this. It might be allergies, it might not be.
It is wonderful you have a loving husband. You need the love and support. Especially when you are feeling your lowest. My boyfriend said it very well "I don't know what to do for you half the time, but I am there for you." Knowing someone you love is there for you, is very powerful medicine...if not for your body, at least for your soul. You are very lucky. Not only do you have a loving husband, but a beautiful baby girl. Big Hug for you. :-)
Hi Diane - I loved your post! :-) I am definately going to try Reiki. You know you are very right. It does feel like grieving. I miss my old life too, and the things I could do without thinking about it. Now I have to think about everything. Will that walk wear me out? Will I have pain today? Will I be able to keep that meal down? Did I take all my medicines? It weighs on you emotionally....everyday. Gets tiring. I think we need alot of positives in our lives, things to look forward too. Because we have enough to deal with medically. I made a deal with my boyfriend we both agree on. He watches how much I eat too, and it upsets him when I can't get a meal down. So now I try to eat (even if it's only a few bites) what I can, but I try lots of little meals instead (even if it's just a bite of bread here and there throughout the day). Seems to help some during an episode, and I still feel like I am getting something in me. I want that snickers bar too by the way.... and oh! what I'd give for a good cup of coffee. I wish they'd find a cure. Hugs for you...I am very glad you have started having some good days. :-)
Gods Son --- I haven't seen you in awhile....Hope your ok
Cathie- Hope you are doing ok too. :-)
hi Diane...I have got brd 2 / 3 weeks after the my gallbladder removal. how you felt this 13 year?have you had before the dizziness?when have started that do feel dizzinesses?this year with brd or earlier?have had before nauseas or now?
I living very difficultly...feel strongly ill and all strength which have spend on the child...what did take from medicines?I think that my dizziness has embroiders with brd...does you have the gastritis?
i have endoscopy 2 months after my GB removal...endoscopy shows only bile reflux and mild cascade of stomac...not gastritis...
in my opinion ...bile reflux have relationship with dizziness...i fell that like im very drunk...but i never drink alcohol...something like whaen blood prresure is to much low...but my blood presure is good for now...hope you will understand me...my english grammar and past times grammar is very poor...bye...and write...how you fell...and how are you...bye...bye..
HI DRAGONLADY... IT WAS GOOD THAT US HUNDRED TOP HAS ON FORUM...FOR HELP AND CONVERSATION...I HAVE READ MUCH AROUND BRD...ON PAGES MAYO CLINIC...AND ON OTHER ENGLISH PAGES...HAVE SEEN THAT A LOT HANG SPEAKS ABOUT ACID REFLUX...JUST LITLLE ABOUT BRD...
ONLY OPTION WHOM I READS OPERATION RNY BUT IT IS VERY RISKY...NOWHERE HAVE NOT READ THAT SOMEBODY HAS HELPED THIS OPERATION...WHAT YOU DO THINK ABOUT THIS SURGERY?DO KNOW SOMEBODY WITH BILE REFLUX THAT DO DECIDE ON SO BIG STEP?
I KNOW THAT BEST EVERY OPERATION AVOID...
IM VERY HAPPY WHEN HEAR THAT HAVE SUPPORT YOUR BOYFRINED...AS ALL WE NEED SUPPORT...I LIVE FOR MY FAMILY.HOPE THINGS WILL BETTER...
WHERE ARE OTHER MEMBERS ON THIS FORUM???WE MUST TALK ABOUT BRD...
I WILL WRITE AGAIN...BIG HUG FOR YOU TOO :)))
Hi Azra - Are you talking about the surgery that redirects your stomach to your colon? If so I asked my doctor about this for me and he told me "No, it wouldn't do any good." That doesn't mean it won't help someone else. However, I have not heard any success rate on this surgery. Just bad things and comments.
The other members come and go. I read all the posts today. If some are like me (I am battling a fever, nausea, and a headache as I type), its hard to get on here when you have episodes. I had like a 7 month period where I wasn't even able to type a response. You are right though, we do need to talk about BRD. It is nice to know a person isn't alone. By the way, my boyfriend is a big teddy bear. He makes me smile. LOL Hugs for you :-) I hope you get to feeling better too. Your family is lucky to have you...hug them alot. :-)
I HAVE THOUGHT ABOUT Roux-EN-Y SURGERY...FOR BILE REFLUX...HAVE READ THAT IS THIS ONLY OPTION AROUND THIS BILE REFLUX...BUT THAT IS RISKY...
HAVE READ ABOUT NISSEN FOUDUPLICATION SURGERY...BUT THIS IS MORE FOR ACID REFLUX...I NOT TALKED WITH MY DR ABOUT ANY SURGERY YET...
BUT MY PROBLEM IS CROHNS DESEASE AND DYAREAH...THIS OPERATION IS A LOT RISKY FOR ME SUPPOSE...
BY OTHER SIDE...MY PROBLEM IS BECOUSE OF MY WIDE SYMPTOMS...IT,S VERY DIFFICULTLY LIVE WITH ALL OF THEM..,
YOU SAYS:"YOUR BF IS BIG TEDDY BEAR...WHAT HE SAY FOR YOU???...:)))HAHAHAH...
TODAY I HAVE LOOKED AT VIDEO SPOT ON YOUTUBE...HTTP: / / www.youtube.com / watch?viDzbTDX3zfk=&the featurefvst= AND MY HOUSBAND TOLD ME...HE IS FUNNY LITLLE TINY DOG
AND IM FATY HIPPO ELEPHANT /OR HIPPO WATER HOARSE...HAHAHAH...
Hi Azra - Your Crohn's disease might be a large contributing factor with your Bile Reflux. It is hard to manage other symptoms, but they have to be addressed so you can start feeling better.
LOL, my boyfriend thinks I am funny. I like seeing him smile. It is hard on him most days to see me in pain, or see me getting so sick. I have had a rough week. Hugs to you as well, your week has also been rough.
Hi Dragonlday and all my fellow BRD'ers,
I guess I've been quite lucky since my first episode in June which landed me in the ER.
In July, my doctor put me on a bland diet. The foods that worked the best for me were complex, high fiber carbs like brown rice, steel cut oats, 7 grain bread, quinoa and whole grain couscous.
The problem is that I'm also diabetic and all those carbs, even though they're not simple carbs, wreaked havoc on my glucose levels.
I've been slowly adding back foods to learn what I can eat. I was surprised that tomatoes caused no problems but chocolate made me feel like someone was stabbing me in the back.
My big issue isn't pain, but burning. My stomach feels like it is on fire as does my small intestine. Cholestipol has helped tremendously with the bile diarrhea but does little for the burning stomach and that feeling of a lump in the throat.
My question deals with alcohol. I rarely drink and my GI doctor said to give it up entirely. Do any of you drink wine or other alcohol? Does it affect your BRD?
Thanks,
Cat
Hi Cat - welcome back!! :-) I am not sure how alcohol affects BRD. I will have to ask my doctor on Friday. I am not a drinker either, but an occassional glass of wine with a meal, I don't see why it would hurt. It's not binge drinking or "getting hammered". Maybe they recommend this because of some medications they prescribe. One wouldn't want to mix pain medications with alcohol. I'll let you know on Friday what I find out. Good question :-) PS - Very glad to hear you are feeling better.
Thank you Dragonlady. I feel awful calling you that! You seem to be such a nice person!
I do want to thank you for starting this discussion. There doesn't seem to be anywhere else on the entire Internet for group support. Are we really this alone with our shared condition? I wonder just how rare this condition is.
I live in a major city where there are support groups for everyone from depressed rose gardeners to deranged closet organizing freaks. But nothing for BRD.
I've been trying to find out if there is any medical research going on and there doesn't seem to be anything. I guess there's no money in it and we just have to hope that an existing drug turns out to also help BRD sufferers.
I was at a party last night and didn't touch the alcohol. I decided it just wasn't worth it. I still woke up in the middle of the night with my stomach on fire and that nagging "lump" in my throat. Compared to what you experience, I feel like a wimp complaining about it.
I look forward to hearing what your doctor says about drinking.
Cat
Hi Cat - I am a nice person...if you want you can type DL for my name, instead of the full type.
I know what you mean about support groups, so I have started my own. Please see address at the end of my article. It's brand new, so don't be shocked if you go there and no one is there yet, but I'd love to have you as a member. I am trying to get the word out as best as I can. I am very tired of not having a group to chat with on a regular basis. We have to live with these symptoms daily, so we should have a place to go to talk and vent. Maybe it will do some good and the medical community will take it more seriously. We need help, we need a cure. Now we have a place.
PS...you are not a wimp. :-)
Please do not hate me for sharing this again. I know that I keep hammering this but it works. Food Combining helps stop the pain and burning at least for me. PLEASE TRY IT AND SEE.
By Dr. Herbert M. Shelton
Reprinted from Dr. Shelton's Hygienic Review
There are sound physiological reasons for eating foods in compatible combinations. In other words, some foods, if mixed in the digestive system, will cause distress!
The principles of food combining are dictated by digestive chemistry. Different foods are digested differently...
Starchy foods require an alkaline digestive medium which is supplied initially in the mouth by the enzyme ptyalin;
Protein foods require an acid medium for digestion- hydrochloric acid.
As any student of chemistry will assure you, acids and bases (alkalis) neutralize each other. If you eat a starch with a protein, digestion is impaired or completely arrested!
The undigested food mass can cause various kinds of digestive disorders. Undigested food becomes soil for bacteria which ferment and decompose it. Its by products are poisonous, one of which, alcohol, is a narcotic that destroys or inhibits nerve function.
It plays havoc with nerves of the digestive tract, suspending their vital action such that constipation may well be a result! As set forth in Dr. Herbert Shelton's FOOD COMBINING MADE EASY these are the salient rules for proper food combining.
The Nine Basic Rules of Proper Food Combining:
1. Eat acids and starches at separate meals. Acids neutralize the alkaline medium required for starch digestion and the result is fermentation and indigestion.
2. Eat protein foods and carbohydrate foods at separate meals. Protein foods require an acid medium for digestion.
3. Eat but one kind of protein food at a meal.
4. Eat proteins and acid foods at separate meals. The acids of acid foods inhibit the secretion of the digestive acids required for protein digestion. Undigested protein putrefies in bacterial decomposition and produces some potent poisons.
5. Eat fats and proteins at separate meals. Some foods, especially nuts, are over 50% fat and require hours for digestion.
6. Eat sugars (fruits) and proteins at separate meals.
7. Eat sugars (fruits) and starchy foods at separate meals. Fruits undergo no digestion in the stomach and are held up if eaten with foods that require digestion in the stomach.
8. Eat melons alone. They combine with almost no other food.
9. Desert the desserts. Eaten on top of meals they lie heavy on the stomach, requiring no digestion there, and ferment. Bacteria turn them into alcohols and vinegars and acetic acids.
Hi Woody- Welcome back :-) Thanks for sharing your comment. I don't hate you...what would make you think that? I always enjoy hearing from you. Was beginning to worry, it's been a couple weeks. Very glad to hear from you. You should pop on over to the website I posted at the bottom of the article. Would love to have you as a member. So glad to hear from you :-)
I am glad to have found this site. I have been dealing with pain and digestive issues since 2004 when I had my gallbladder removed. I had an upper endoscopy just this past Monday and the gastroenterologist said that I had a fair amount of bile stains and bile in my stomach but he attributed that to the fact that I didn't have a gallbladder. I am wondering if I might have bile reflux. I have had severe stomach pain for the past month with incredible burning, nausea, dizziness, stomach spasms and a feeling like my heart is stopping or I'm going to pass out. I am also gluten intolerant and when I had a similar episode a year ago, just thought it was the gluten issue. I am wondering what to do next? I have had more than one trip to the ER with no help. My doctor has referred me to another gasttroenterologist. I am currently taking Librax which helps the pain and calms me but my doc tells me I can't take it for a long time. I had a bad reaction to carafate (shortness of breath, pain, dizziness). I am shaky and weak from the inability to eat and I'm almost afraid to eat right now. The only things I can settle are well-cooked vegetables like spinach, squash, and steamed potato. I have eaten some quinoa pasta and an occasional egg. Any ideas for foods? I appreciate this page. It has given me a direction to look in but I'd love to find more natural supplements. I hate taking any medications.
Hi Feeling Alone- Thanks for posting, if you think you have BRD, call your doctor back to make sure what he diagnosed. Sometimes they don't tell you but turn around and start prscribing medicines. I about missed my diagnosis the fisrt time and had to call. The medicines sound the same for what they treat us with. I don't like taking the medicines either, they help one day and not the next. I am glad you are here, you are not alone any more. :-) Maybe we all (with our posts, ideas, and suggestions, can find a way to live with this condition. Welcome :-) PS Woody's post above has some good ideas for food. Don't get discouraged though if something bland doesn't hurt your stomach one day, but does the next. Bile changes all the time.
Thank you for your post. I will try to get to the bottom of a diagnosis. I don't know what the issue is but I feel so weak at times that I wonder. Mornings are the absolute worst time for me. If I can get through the morning and then eat blandly all day, I do well. I am so sick of steamed vegetables! I am going to make more quinoa pasta today for a change. I am investigating probiotics and hoping to add my vitamins back in soon. I have never felt this run down. Any idea what causes the heart palpitations? I suspected dehydration and am trying hard to drink more. Again, thank you.
Hi Feeling Alone - I have been experimenting with Probiotics with mixed results. So I asked my Doc yesterday about them. Probiotics will put good bacteria back in your colon which helps with that part of digestion. However, it does nothing for the bile. If you discover your doctor diagnosed you with bile reflux disease, it's the bile that is your body's enemy (wrecking havoc). You can check out the website at the bottom of the article to join in discussions there if you'd like. It's new so leave a message if no one is there. As for diet and vitamins, well BRD diet can be changed but doesn't do a whole lot, though spicy foods should be avoided. Watch out with the vitamins. I found out the hard way that they can constipate you, and in some cases severely. Ask your doctor or pharmacist about what kind to take. Hope you get to feeling better, I feel for you....mornings are rough. Hug for you.
Hi- I do not have my official diagnosis but I believe this is what I have. I had my Gall Bladder removed 7/10 and 3wks later had my first "upset" stomach. The stomach aches started happening more and more and turned into burning. Finally, I had a day of just a lot of stomach gurgling and gassiness followed by the burning. I say it feels like there is acidic sludge in my stomach that is just percolating. I was told by my surgeons to take pepcid and come back in a month. I called my PCP and went to see him. He sent me to a GI who then performed an endoscopy last week. When I woke I expected her to tell me she found ulcers but she said what she found was a lot of bile (and I was having a good day at the time). She sent me home with a Rx for Carafate. That has helped some but I am still not able to eat. Also, I develop this sour taste in my mouth after a few bites of anything. I have been trying to stick with bland foods and gave up coffee. Last night I did have problems with the peculating and bad feeling. I have yet to experience it coming up my throat but I was pretty close last night. I have been losing about .5 to 1 pound per day. I am overweight and ironically paid to have a gastric band put in back in Feb. I don't need it now since I am lucky if I can get 500-800 cal in a day. I have lost close to 15lbs this month with all of this going on. My biggest complaint is not having enough energy or feeling well enough to play with my 3 year old. Or take my 12 y/o places. It really is debilitating and I just don't think my husband truly understands the toll it takes on me. He is a caring man but he is frustrated with me always being sick. I am too.
Hi Krober - Thanks for your post. I really do feel for you. BRD is frustrating, and it hard to live in a world where the doctors give us the thousand mile stare. Where family/friends feel helpless and frustrated, and we feel miserable and ill all the time. Welcome and hugs for you. Because it's awful to have this condition, and it really makes you feel alone and gets depressing. You need all the support you can get, not to mention hugs. It might sound cheesy, but they help with the depression knowing your loved one cares about you. The eating part is going to be difficult. When you are having a flare up food is sometimes impossible to get down even though you want to eat it. You might try eating small amounts as your system can handle throughout the day. It is hard for a loved one to see you eat like a bird, but they also have to realize you are very sick at the moment. It is beeter to eat what you can, than eat a meal and be nauseous
krober - I was meaning to say... It is better to eat what you can, than eat a meal and be nauseous. (Sorry for the typo. I am sometimes not the greatest typist). I hope you get to feeling better (talk to your doc if you don't, I set up a web page to better chat with BRD sufferers if you'd like to visit there. It is posted at the end of the article. Would love to have you there. Sometimes it is better to discuss BRD there. :-)
Sorry, I've been out of touch, I have been very sick. Barely making it to work, thank goodness I was approved for FMLA. Of course we all know employers can get around it!But a little harder for government agencies who are under a union contract.
Well my symptoms got worse and I started vomiting bile numerous times per day,especially at work and during the night. So I have given in and started using Reglan and Carafate 4 times per day, prilosec every other day. This is day one and feel a little better, still have reflux but no vomiting so far!
Reglan is only a patch as you can not stay on it for more than 3 months. Plus, side effects of the drug is alarming.
I also have decided to go to Mayo in Scotsdale AZ. I have an appointment for 12/01/10 for a second opinion as to treatment. The docs here in vegas just keep passing you around as they don't know how to treat BRD. For some reason they don't want to prescribe Ursodeoxycholic acid. Not sure if it is because drug companies aren't making them aware of it or the marketing of it. Has anyone tried this mediacation?
I have found that ginger tea or ginger snaps do help with the nausea, but you must use in moderation of it can make gastritis worse if you use to much. I found out the hard way!
I found Woody's post very interesting and I am going to look into that further. At this point anything is worth a try! I know I do eat carbs by themselves and still had some issues lately, but nothing I ate seemed to work the past few weeks.
One thing I don't have is an issue with eating when I feel sick, I force myself. Years ago I had hypoglycemia. the doctor put my in the hospital fed me IV and they did not give me any food for 2 days until I went into hypoglycemic attack, then gave me gluclose. He had a dietician come in and explain why I needed to eat small meals every 2.5 hours during the day. That my body could not handle eating just a couple meals per day. She told me that if I did not get my diet under control I would have diabetes within 5 years. I got to the point of pre-diabetes and now keep my gluclose below 90. So even if I feel sick I eat, once I get food into me I do feel better than being empty.
Keep posting it helps all of us.
I agree that having this place to post and read is extremely helpful. I am going to experiment with some different foods and see what happens. The biggest problem is that the pain is so bad at times that I'm afraid to try new things because I'm afraid of the stomach pain. It's a horrible cycle! Who would have known that having a gallbladder removed would cause all of this. My gallbladder wouldn't empty and I was in pain from it. So, the doctors said I had to have it out. I read that if I had taken digestive enzymes - more specifically lipase, I might have prevented needing this surgery. It does make me wonder. I have also been reading about lipase - my level is low. I wonder if this has anything to do with all of this stomach trouble now?
Hi Cathie - from what I was reading about ursodeoxychloric acid, it is mainly used to dissolve gall stones,and sometimes alleries and is a secondary bile form formed in the intestines. As I read on, it seemed like you were increasing the bile to dissolve stones. I am thinking I hate the amount of bile I got, let alone add more? Plus it excretes sulfa esters, which if you are allergic to sulfa like I am...would be bad. It was a scary article...just think if the drug comapnies know this creates higher bile, sufferers like us might increase? Think of the profit they could make.
I am sorry you had a flare up, I had one too, but am really glad to hear from you. You know? you made a very good point. I have also noticed I burn more when I don't eat. It's like your stomach is begging for food all day long. Maybe there's a corralation with that because the purpose of bile is to digest and if nothing is there, it tears at the stomach? I'd hate to think we have to eat small meals all day long, everyday. Like we are eating machines on a rampage just to feel half way descent. But then there is also the matter of being sicker than a dog when we do eat. Is there no happy medium? There's got to be.
Yes...keep posting...I perked right up when I saw you had posted. We need these cyber hugs and friendship. For me, and I hope the others, it helps to know we have each other to lean on. Even if it's just to say hello. It truly is a "pick us up" to know someone cares. :-)
Hi Feeling Alone - You brought up a great point as well, Lipase. When they are taking half my blood, literally, Lipase and amylase levels are two of the things they check. I was told it's because if the levels are high, it could lead to pancreatitis. They never really told me what if did if the levels are low. If you find out could you please let me know? It really freaks my boyfriend out how much blood they take to check levels. Do you have to have alot of blood work too?
I know what you mean about the pain. I never thought about food after I chewed/swallowed it until it hit my stomach like a punch in the gut. I get so tired of feeling every bite. It sounds like you have spasms as well. If doc hasn't put you on Bentyl (dicyclomine is the generic) for the spasms, you might ask about it. You shouldn't take it everyday, because it will constipate you, sometimes severely and it causes drowsiness. However, it is very helpful to control a spasm until your flare up eases up some. I hope you get to feeling better at least so you can eat. You are right, this condition is miserable, but you have us now, so you don't ever have to feel alone. :-)
HI DRAGONLADY...I WAS SO TIRED AND BAD LAST DAYS (BUT I READ ALL YOUR POSTS)...I WAS WITH MY DR LAST DAY...I ASK HIM MUCH ABOUT BILE REFLUX...
HE DIDNT GIVE ME A RIGHT ANSWER...HE TOLD ME...AFTER GB REMOVAL...MUCH PEOPLE HAVE BAD INDIGESTION...LIKE ME...MUCH METHEORISM (AIR INSIDE)...HE PRESCRIBED ME PANCREATIC ENZYMS...BECOUSE I TOLD HIM...I HAVE SOMETIMES PAIN IN STOMAC...OR PANCREAS...HE TOLD ME THAT MY PANCREAS IS TO BUSY...AND NEED LYPASE AND ENZYMS...FOR EASIER INDIGESTION...
HE GIVE ME CONTROLOC FOR TO MUCH ACID...TOO...
ALSO I ASK HIM ABOUT URSODEOXYCHOLIC ACID...IF IT MABYBE HELP ABOUT BILE REFLUX...HE TOLD ME...NO...
URSODEOXYCHOLIC ACID PROMOTE BILE FLOW...AND IT HAVE MUCH CONTAINDICATIONS...LIKE DYAREAH...ETC...
HE TOLD ME...I MUST EAT SMALLER(food without fat...and sugar)...5-6 TIME AT DAY...
USE PANCREATIC ENZYMES...AND CONTROLOC...FOR NOW...
MY BLOOD TEST FOR AUTOIMUNE DESEASE(lupus...sjegren...etc...) ARE OK...AMILASE AND OTHER ENZYMES ARE OK TOO...BUT HE DONT KNOW ANSWER ABOUT ALL MY SYMPTOMS...
I WILL WRITE AGAIN...NOW I JUST WANT GO TO BED ...(im so tired of this,so sad,and so crying)...
BUT I HAVE HOPE...WE MUST FOUND SOLUTION FOR THIS...
HUGS:)))@BEST WISHES...FOR ALL US...
Azra - I am sooo happy to see you! Please don't cry. We are here for you ok? Even gall bladder surgery is traumatic...I cried after having it done. Please click on the website I posted at end of my article. We can chat better or on both our bad days cry together. I have had a horrible week too. My flare up has been miserable, accompanied with severe sinus migraines. Boyfriend asked the doctor if I should be put out to pasture yet....he is too funny. Thank Goodness for you. :-) You all thank me, and say I inspire, but I think it's the other way around.
I am going to a clinic called Women to Women in Maine next week. I will ask about low lipase. This clinic is wonderful and looks at your health from all angles. THey can do many alternative tests that a regular doctor will not do. I went a year ago and found I had gluten sensitivity and by eliminating gluten, had a whole year pain free. Now this issue but I am going to try again. There must be something! Also, a book I use a lot is Restoring Your Digestive Health by Jordan Rubin. I think he has many good ideas. Probiotics are one. I also make my own kefir and had stopped making it this summer (just got lazy). I have started making it and will start taking teaspoons of it as soon as it cultures and I feel strong enough. I do not have a lot of faith in doctors - as you can probably read into this - and feel if we find things on our own that don't have horrible side effects, we're better off. Take care!
Hi Feeling Alone - I know what you mean about docs. I like my reg. care provider, but even after this visit, I have been down in the dumps. He sort of barked at me about the probiotics, but told me I could take 2 of the pill form (instead of the 1 I was taking), since I am not a big fan of yogurt. I was looking for Ginger tea today at the store. Cathie had mentioned that helps with nausea. I couldn't find any, but definately want to try it. Ok...what is Kefir? Very interested to know. I don't like side effects either. :-)
Thanks Dragonlady for the welcome back note. I checked out your website and I believe it will be a great help to many BRD sufferers. I am just really busy right now. Thanks for what you do to help so many of us.
According to Wikipedia - Kefir is a fermented milk drink that originated with shepherds of the Caucasus region of the former Soviet Union, who discovered that fresh milk carried in leather pouches would occasionally ferment into an effervescent beverage. It is prepared by inoculating cow, goat, or sheep's milk with kefir grains.
I read that gas from the probiotics can improve over a period of several weeks. I think there is great benefit from taking them (amen on Jordan Rubin's insights). It is important to chew your food well and not drink excessive amounts of liquids with your food. The digestive juices work best when they are not diluted. Drinking 2 liters or more of water each day is a must, just not with you meals.
I agree with you guys, I cannot stand for my stomach to be empty. I keep raw almonds (are best) or roasted almonds near me at all times.
I take DGL (licorice) when I have some burning or pain and it seems to help me. I also like Stomach Comfort which is also natural. When I watch what foods I combine that usually prevents any pain. Avoiding stress or stressors when possible, as you all know is a big help as well. Keep looking up!
Hi Woody :-) Oh wow! thank you so much for your post. It's great to see you. So can you buy this Kefir/milk any place? I saw doc Friday, but am miserable from all the allergy meds he put me on. My stomach is in knots, no sleep, augh....please some relief. I hope the probiotics work. I have noticed though they aren't very helpful with the bile, but at least I can keep a meal down, and I think it really helps with the IBS. So doc told me I could amp the dosage up on that. Yeah. What's stomach comfort? LOL...I feel like a little kid today aking so many questions. Hope that's ok :-) Big hug woody :-)
Hi Dragonlady, In Virginia I found Kefir in Krogers, Trader Joes and health food stores. It is reported to be even better for you than yogurt and may some persons who have food allergies.
Stomach Comfort is available through Nature's Sunshine. It has Calcium carbonate, Slippery Elm bark, Ginger, Papaya fruit and Licorice root to name a few ingredients. It is a natural antacid. I find it quite helpful. I am happy to share anything that might benefit others. Blessings to you! :-)
Sorry, I left out the word "help" above. Some articles suggest that Kefir could "help" with food allergies.
Because I try to eat 2 to 3 hours before bed time, I find that drinking soy or rice mild with a teaspoon of raw honey about an hour before I go to bed helps me not get so hungry in the night. Keep looking up!
Hi Woody - Hey! we have a Trader Joes here, I will most definately have to check this Kefir out. Thanks for your posts, I think they are helpful. :-) Cathie mentioned ginger tea, so I am trying to find that as well. Trying to keep chin up....been hard last few days.
:-)
HI DRAGONLADY...WE MAKE OWN KEFIR TOO...ITS CALLED INDIAN KEFIR OR TIBET MUSHROOM...I DONT HAVE KEFIR YET,BUT I WILL TO GET IT FROM MY COUSN...SOON...
ONE FRIENDS SUGGESTED ME TOO...CAPSULES GINGER FOR NAUSEA...
I ASK MY DR...ABOUT BILE...AND HE TOLD ME...AFTER GB REMOVAL OUR BODIES/LIVER HAVE MORE BILE...
HE EXPLAIN ME:...FATY FOOD...STRESSED SITUATION...ETC..MAKE MORE BILE...AND IF BILE SITTING IN STOMAC THATS BAD...BUT MORE BADLY IS IF BILE COME INTO OESOPHAGUS OR THROAT...ESPECIALY IF BILE CORELATE WITH ACID REFLUX...HE PRESCRIBED ME CONTROLOC AND RUPURUT FOR ACID REFLUX AND QUESTRAN FOR BILE REFLUX...BUT IT NOT HELP ME MUCH...
I TRY TO FOUND OVER INTERNET WHAT CAN REGULATE BILE...AND FOUND THAT TEA OF Thymus serpyllum (LATIN NAME...I DONT KNOW HOW IS ENGLIS NAME)...CAN REGULATE BILE...
AND THIS TEA IS GOOD FOR STOMAC (PAIN,SPASMS),INTESTINE,PREVENT DYAREAH,
NERVES...AND ITS ANTIBACTERIAL TEA TOO...
MY DR TOLD ME TOO...I MUST RELAX MYSELF...BUT HE DONT KNOW MUCH ABOUT BILE REFLUX...HE TOLD ME IM HEALTHY...BUT I TOLD HIM...YES MY TESTS ARE OK...BUT I FELL SO SICK...
MAYBE I DEVELOPED ALLERGIES AFTER MY GB REMOVAL TOO...
I WILL CHECK INTOLERANT TESTS FOR FOOD...(GLUTEN...ETC..)
ALSO I READ THAT WATER COULD HELP ABOUT STOMAC PAIN...(TO DRINK WATER OFTEN...AND LITLLE...)...BILE/ACID IS VIOLENT AND WATER WILL DILUTE ACID...AND HELP WITH PAIN...
ITS WAS AN ARTICLE...WATER AS MEDICINE...POWER OF WATER...
I ASK MY DR WHEN LIVER PRODUCE THE MOST BILE???...AND HE TOLD ME AFTER MEALS...HE TOLD ME...USE QUESTRAN BEFORE GOING TO BED (QUESTAN WILL BIND BILE AND PREVENT BILE REFLUX TO OESOPHAGUS)...MAYBE IT WILL HELP...BUT IT HELP LITLLE MAYBE...
I TRY TO GET SECOND OPINION...I WANT ANSWER...DOCTORS THI
NK...THAT BILE REFLUX IS NOT IMPORTANT PROBLEM BECOUSE RARE PEOPLE VISITIS DRS WITH THIS PROBLEM...
WE CANT WAIT BARRETS OESOPHAGUS OR CANCER...BECOUSE BILE REFLUX DAMAGE...WE NEED ANSWERS...
I FOUND I HAVE VERY LOW VITAMIN B KOMPLEX...ESPECIALY B6...AND B9...I TRY TO FUOND WHAT SPENT MY VITAMIN B...ESPECIALY OUR BODIES GET VITAMIN B EVERY DAY WITH FOOD...MAYBE I DEVELOPED MALAPSORPTION THIS VITAMIN...OR PANCREAS SPENT MY VITAMIN B TOO MUCH...I WILL TRY TO GET ANSWER...
ITS VERY RARE TO HAVE LOW VITAMINS B...I USE MEDICATION B KOMPLEX VITAMIN....
BLOATING AFTER GB REMOVAL IS PROBLEM TOO...I READ THAT CANDIDA ALBICANS CAN DEVELOPED AFTER GB REMOVAL...AND CAUSE BAD INDIGESTION,BLOATED,ALLERGIES...ETC...
I DIDNT CHECK MY STOOLS YET BUT I HAVE INTENTION TO CHECK...
I make my own kefir from unpasturized goat's milk. I was given the grains from a friend of mine. I will have to ask him how he started them. Maybe I can send some to you - or any who want them. My stomach issues started again when I stopped drinking it. I have started to make it again, just the other day. You can also buy coconut milk kefir if you have a Whole Foods store near you. The strawberry is my favorite. The ones you buy are not as potent as those you make but will help some. Probiotics should help, too, but it takes time. I kick myself for stopping the routine I had with these things. Everything spiraled after that. I was feeling so good that I thought I was healed. No such thing!
Hi Feeling Alone - Thanks I will check out our local Whole foods store. Today has been miserable with the burning. BRD is like a lurking monster waiting to spring on you... I do dream of those days of feeling good again. Maybe someday. Hope your day is better :-)
Hi Azra - looks like the Thymus Serpyllum is called "Creeping Thyme " or "Wild Thyme" in English. I love tea, so definately will check into this. Especially if it will help with Bile.
Doctors do have a tendency to put BRD on the not so important list. I am sure if one of them suffered from this, it would be thought of differently. It is very debilitating. Mix it with other things going on with your body, and it's a nightmare.
Thanks Dragonlady - I have not had any luck with the GI. My energy is very low. I already had anemia and now I am too afraid to take my iron. One thing I did notice is that when I missed a dose of my Wellbutrin, my stomach felt better. So, I called my doctor to see if I could come off of them for a little while to see if it helps. I have only been on them for just over a month and that is when all my problems started becoming more problematic. I am keeping my fingers crossed that this will help with most of the problems. I have already noticed the sour taste in my mouth is gone. I take carafate before eating and pepcid if needed. Do you know of any medication besides carafate that is helpful with this? Thanks
Hi Krober - Help me out alittle, because I am not sure how to answer your question. (I am very sorry I am sicker than a dog today, but I will try to help.) Medication to ease what symptom(s)?
Dragonlady, how are you. I've been away awhile, the Lord is taking care of me and I'm better. I'm praying for y'all going through this too...
Hi God's Son :-) Have missed you. Glad you are feeling better. I finally started a support group...you should join, we could use your support.
Hi God's Son
I'm so happy your feeling better too. Was there something in particular you took/did or medication you used?
Perhaps my experience can provide help and hope. I had my gallbladder removed one year ago and felt mostly better until July when I suddenly became nauseous. For eleven long weeks I was in miserable agony with loss of appetite, radical weight loss, and four costly hospital stays. I had also been suffering from dizziness for three years. The only positive results from extensive medical tests were bile in the stomach, gastritis, and nystagmus (jerky eye movements). What finally ended the nausea was the drug Celexa, one of the SSRI antidepressants. Things began improving two weeks after I started taking it. Now six weeks since I started the drug, I'm back at work, feeling terrific, and have gained almost all the weight. I was very hesitant to take an antidepressant at first until I learned that 90% of the serotonin receptors are in the gut and that the SSRI drugs are prescribed for IBS and chronic nausea. It was at a balance center within an ear, nose, throat office that I learned I had the nystagmus, suggestive of migraines, even though I never had what I would consider migraine headaches. They gave me simple eye exercises to diminish the nystagmus and the dizziness has largely gone away in the last three weeks. The nystagmus also suggested that migraines might have been the cause of the nausea, although I still think the nausea was related to the gall bladder removal. The specialists I saw could not agree on a diagnosis. Two specialists thought it was stomach migraines. Another thought viral infection of the lower brain or brain tumor not yet detectable on an MRI (yikes). A psychiatrist thought psychosomatic. All I know is that Carafate and Cholestramine never helped, but the Celexa saved my life. Recently, one of the docs prescribed an additional antidepressant, Amitriptyline (Elavil), to help me sleep at night. I learned this one is prescribed for migraines and eating disorders as well as depression. I took this one once before and it helped me gain weight. It is helping me sleep better already after one week. At any rate, I have no ties to the drug profession, nor have any reason to push these drugs. I just hate to hear these awful stories, having experienced it for myself and now am feeling so much better, nearly back to normal in such a short time.
Hi everyone, I am new to this site but very happy I found you guys. I have been in severe pain for 3 months and finally got answers this week. I had my second scope done in a month and they found bile in my stomach. The doctor is testing it for bacteria so I cant see him for another 2 weeks. I was wondering if anyone experiences headaches when there stomach starts hurting? If I eat something that upsets my stomach I always get a headache. Its so frustrating, and of course painful. But I am just so happy that I have an answer to all my pain. Thanks for listening.
Hi Larks - Welcome, and Thanks for sharing. :-) It would be great to know if Celexa was the "miracle" we Brd sufferers are looking for, especially since my GI doc mentioned pain receptors as well. I take it, but it doesn't do much for sinus migraines...would love some help there (any ideas?). Cuz, I am miserable with these. Also what did you do to gain some weight back? This is my worst nightmare with BRD, (20-30 lbs. at a time with flare ups).
Hi Lee13 - You will always have someone here to listen. Welcome :-) Yes, I get migraines all the time, but they are severe sinus migraines (I am pretty sure). Larks comment is very good talking about migraines. I have had it drilled into my head by docs for 3yrs that stress is BRD's worst enemy. Maybe his post can help us both.
Btw there is a link at the bottom of the article if you'd both like to check it out. You can post longer comments on there. :-)
Hi Larks, its good to hear some good news.....what strength of amtryptline do you take and how many times a day. I take this also but just 10mg once a day.
Sorry Larks, also, what strength of celexa are you on...? Its great you are feeling back to your old self.
Thanks dragonlady. Forgot to include that I am 50 y old gal. I have nothing on sinus migraines, but Amitrip. is sometimes prescribed for migraines. I take 20 mg of Celexa each morn. and 10 mg Amitrip. each night. The doc said I could step up to 50 mg Amitrip. but there is a tiny risk of "serotonin syndrome" (muscle stiffening, fever, coma). The weight loss was definitely the most terrifying part of all this. To regain I ate seven meals a day including Glycerma, multivit., lifting light weights, moderate walking and gardening, and lotta laughing with family. I also found a product called Digest More helpful which includes lactase, amylase, and other food enzymes. I've found that Amitrip. has increased sleep, appetite, and firmed stools, all of which induced weight. Dragonlady, have you looked into "cyclic vomiting cycle?"
Hi Larks - Thanks...I really like the alot of laughing part. I am going to sneak hugs in there as well. :-)
I will have to check into Digest More....Doc had me on Amitrip, but took me off because it wasn't working for me at the time. I will have to mention it to him again. No..I have never heard of cyclic vomiting cycle. What is it? I have to watch out for firm stools. I retain for some reason and it poison's my system.
Hi Larks - I looked up Cyclic Vomiting Cycle. That was some scary stuff to read. I hope no one has to go through that either. BRD is bad enough. Mine is definately from BRD. I have been lucky in the vomiting area, where it doesn't happen alot, but the sinus migraines are miserable and debilitating.
Hi - dragonlady! I just wanted to say Thank You for the support and give you and all of your readers an update. I have been off of my wellbutrin for just over a week. I felt better daily and was symptom free 5 days after coming off of the wellbutrin. I have been able to come off of the carafate and dexilant. I am hoping that some of your followers may be able to make the same connection I did and possibly solve the bile reflux they are having. It is amazing to me how debilitating bile reflux is and how the people around you, who have not had to suffer with it, can't grasp just how bad you are feeling. I truly wish you all well.
Hi Krober - :-) I am so glad you are feeling better. It is great to have good days. We all want to feel better and I think your post will give someone hope. It's nice to know you are here for us and we are here for you. Hugs for you. It is amazing how debilitating this condition is. Maybe someday it won't be a chronic condition any longer and the docs will know what to do with it. I dream of that day . Keep us posted. It's always great hearing from you. :-)
HI LARKS...I HAVE SAME SYMPTOMS LIKE YOU...NYSTAGMUS...AND DIZZINESS...
I HAD AUDIOVESTIBULOGRAM TEST AND IT SHOW SPONTANOUS NYSTAGMUS 2 LEVEL...I TAKEN MEDS FOR VERTIGO (URUTAL,BILOBIL,VITAMIN E)...AND NOTHING DOESNT HELP ME...
I READ ABOUT CELEXA...ITS ANTIDEPRESSANT???...I TAKE MUCH MEDS FOR DEPRESSION BUT IT DOESNT HELP ME ...
I TAKE BEFORE XANAX,LEXILIUM,APAURIN...(FOR DEPRESSION...
I THINK I DONT HAVE DIZZINESS BECOUSE DEPRESSION...I THINK MY DIZZINESS COME FROM...BRD...
Hello azro, Celexa is an antidepressant in the SSRI (selective serotonin reuptake inhibitor)classification. The Celexa seemed to treat the belly issues. To treat the nystagmus, a physical therapist working for an ear, nose, throat doctor taught me a technique she called a gaze exercise. I stared at a letter drawn on a post-it which was attached to a plain wall four feet from where I was sitting. I moved my head back and fourth like I was saying no for 30 seconds while I stared at the post-it then stopped and starred at the post-it until the dizzy symptoms stopped. I did this three times a day. At first I was extremely dizzy when I tried the exercise. Eventually, I could do the exercise without dizziness. Later I graduated to standing while doing the exercise, then spinning and doing the exercise, then putting the post-it on a complex background instead of a plain wall. The therapist told me that 90% of the patients are cured within 4-8 weeks. She also told me that nystagus indicates a central nervous system problem such as migraines. She prescribed no medicines for this. I had greatly reduced dizziness after only one week.
I wanted to post what I learned yesterday at a visit to Women to Women, a clinic in southern Maine. I have had no luck with regular doctors concerning the stomach pains and possible bile reflux that I have. They keep prescribing things and I keep getting sicker. So, I learned how to make my own kefir from raw goat's milk and have worked up to drinking 8 ounces a day. I am going to try to double that. Anyway, the FNP that I saw initiated a lot of tests. She said that there are many bacterial/parasitic infections that people can get and the medical profession ignores them and throws medications at them. She drew blood to do a complete hormone panel, check my blood serum levels for any infection, did another blood draw for up to 100 food allergies (it's called the ALCAT test), a complete urine test, and sent me home with two stool kits to look for parasites and one for a comprehensive stool analysis (it takes three days of collections) that will look at absorption over time, and many other things. You can read all about this in the book, The Core Program by Michelle Pick. Then, she sent me home with several things to take once I get the stool collected. I will begin with a product called Thermabiotic which is a heavy dose probiotic with supercharged cultures in it to fight any bad bacteria and an anti-inflammatory, Betaine HCL, which is hydrochloric acid that I will take during my meals, two digestive enzymes, and a protein drink to get some vitamins in me. I started that yesterday with no ill effects. She said that she'd like to find out why bile is inflaming my stomach. And, at the same time, help reduce the inflammation so that I can eat. I have already tested postive for low lipase and that is now included in some of the digestive enzymes I'll be taking. Messed up in all of this is my hormones. I had a complete hysterectomy about 7 years ago. My digestion has been much worse since that. I hope that all of you, if you're not having much luck with the medical route, will find someone who can do these alternative tests. I am not sure if they will help me but they do give me hope. The FNP said that often alternative chiropractors or osteopaths will do these tests as well. I also visted the local Whole Foods store where they sell goat's milk kefir all made and goat's milk yogurt. Both are better than cow's milk for digestive issues. If you can't make your own, this is better than nothing. I am also gluten free, which has made a tremendous difference in how I feel on a regular basis. I eat as much organic as possible, only grass fed meats and eggs from free range chickens, purchased from a local farm. My stomach issues started this fall after I had stopped making kefir. That was a bad mistake for me and it won't happen again. The unconventional wisdom out there says that many people are treated for an over abundance of stomach acid when in fact they don't have enough stomach acid. If you don't have GERD, you may be dealing with low stomach acid which is causing multiple complications like bile just sitting in your stomach. Also, my cousin had an upper endoscopy and her stomach was full of bile. The surgeon pumped it out. She's felt good for two years but is headed back to have it done again. I thought that was interesting. Good luck to all of you and God Bless. I know what it's like to be completely debilitated by digestive issues!
Hi Feeling Alone - I find your post interesting. Especially about taking Acid medicine when you aren't having acid symptoms. I don't suffer from GERD, but they put me on a PPI anyway because of gastritis/imflammation. Most days I really question whether I need this or not. I read your tests and remembered most of these, I hope yours will reveal something. Mine kept coming back negative....which gets really depressing at a point because the docs start looking at you like you are crazy when they come back negative. Then again, docs did put me on low dose estrogen since I am getting up there and having night sweats and abnormal monthly cycles. That seems to help (but not w/ BRD). I love you mentioned protien shakes. I think they do a world of good. At least they help me feel better, and I feel like I am getting some nutrients. I still haven't found the Kefir milk yet, but am still looking. You know, as I read, I remembered drinking goat's milk as a child...mom always said it was better than cow's milk. I would just love to dwindle my med list down to nothing.... so tired of this condition. I am very glad you are feeling better :-)
I can relate to you with the negative test results. I have had many. I've been doubled over in pain only to have a doctor say, "There's nothing wrong with you." I'd like him to face the same pain! It is so frustrating. When I went to the Women to Women clinic yesterday, they did not tell me that nothing was wrong. The FNP I saw said, "Of course something is wrong. I can tell you feel horrible. I want to help you find what it is." She has ordered more testing than my doctor has in two months. I am hoping we find the root cause of this issue. It is not normal to have bile in your stomach and there must be a reason why it lands there. I will keep you updated so that if you can find some relief from something I've found, that would be wonderful! If you have a Whole Foods store near you, they have kefir all made. Or, you can order the grains online to make your own. I am making my own now since it's a much greater probiotic. I got the grains to make it from my niece and she got them from someone else. I'm trying to locate the source so that I can post it for all. Take care.
Thanks Feeling Alone - Yes please keep me posted. :-)
If I am not here, please check the web link at the end of the article. I will be at either place. I am sort of rebeling today. Doc had me on Prednisone and after 2 weeks of misery, I have stopped taking it. It's not for the BRD, but alleries so it won't affect my BRD. I feel so much better today. I don't ever want to take that stuff again.
Does anyone get a white coating on their tongue along with the sour taste? Also, do you get pains in your hips during an episode and even weirder, pains under the armpits?
Hi Diane - I get that...and am not really sure what it is caused from. At first I thought maybe the carafate....but I stopped taking it over the summer. I am wondering if Nexium and other PPI's could cause this since acid is reduced so much? What do you think?
Oops...Diane, I was talking about the white coating on the tongue.
Hiya Dragonlady... I've had this white coating for the last 4 months even before I started taking meds. Have had it before in the past when I've not felt well (but no bile). A lot of the time the white tongue and sour taste in itself makes me feel sick. My Consultant thinks the sour taste may be from the bile! What about the pains in your hips etc?? I've had a rough week, bad reflux and terrible bloating. I Was naughty and had some cake but it seemed to take about 4 days before it hit me. Really fed up....
Hi
I have this shit too, thinking of engaging with some laboratory doctors to tray and kick some asses to do some research in order to heal this crap.
So where is the group?What is it's name
Hi Acunga - the link is at the end of the article, and right below the comment button. Sorry you have BRD too. It would be nice if they would do research on BRD...we all hate this condition....it's miserable.
Hi Diane :-) Usually the pain is in my right side and hip. I also get a sharp stabbing pain in my right shoulder blade area. All they did for me was prescribe pain meds when I need them. Nice solution huh?
What kind of cake? I want some :-) Don't feel bad...I cheated with a cup of coffee today. Of course I am really paying for it now...but ahhhh...that cup of joe was good!
Here's a cute story to cheer you up. I feel completely miserable and nauseated. So my boyfriend asked me if I wanted him to wear his kilt today (he knows that would definately cheer me up). LOL...you gotta love him!
Hi Dragonlady.... Chocolate cake - and it tasted sooo good. Your boyfriend sounds great - is he Scottish?
HI LARKS...THANKS FOR INFORMATION...ITS VERY INTEREST IF CELEXY TREAT BELLY ISSUES...WE DONT HAVE CELEXA HERE BUT I WILL ASK MY DR ABOUT CELEXY...AND I WILL TRY TO GET IT...
I WEAR GLASSES...MAYBE MY NYSTAGMUS CAUSE EARS...
I THINKING MUCH ABOUT MY DIZZINESS...MYBE MY DIZZINESS CAUSES BRD...AND NAUSEA...OR I HAVE MUSCULES SPASMS...REALY I DONT KNOW...BUT I WILL TO TRY WITH ANTIDEPRESANTS TOO...I TAKE XANAX BUT IT SEEMS IT DOESNT HELP ME...
Hi Diane -- Oh yummmm...chocolate cake :-)
(LOL) No he's got Irish in him and just as stubborn at times...I've got the Scottish blood. I think he's great, I don't know how anyone can be so patient and deal with BRD like he does (he even admits he really doesn't know how to deal with it sometimes, except to be there). He sneaks me cheesecake every once in awhile. :-) But also holds my hand alot during flare ups. Just one understanding person really helps with this condition (friend, family, anyone...) I hope you have someone just as wonderful. He's on the webpage. We thought it would be a great idea to add family members to it, so they have a place to get BRD off their chests like we do. Sometimes we forget our loved ones go through this with us, but without the pain, nausea and other symptoms. They are just as lost and perplexed as we are... He feels alone too.
Hi Azra - I noticed this with a flare up I had last night. Does it feel like your blood pressure drops when you get really dizzy? and is it by chance while you're in the bathroom? or just dizziness all the time?
My doctor just put me on Prevalite(cholestyramine for generic). Its a powder that I have to drink 3 times a week to hopefully help clear up the bile in my stomach. Has anyone taken this and has it worked? Im really hopeing this works because if this doesnt the only other option is surgery.
Hi Lee13 - Sadly, there are mixed results. It works for some, and not for others. Hopefully it will work for you, because surgery has about the same results. You are more than welcome to visit our BRD web page, many there are using Questran, which is the same medicine group as what you are taking. They'd be glad to chat with you.
Thank you very much Dragonlady youve been great help. I will make sure to check that out.
Your welcome Lee13 :-)
I been suffering from major burning extreme weightloss after gallbladder removal...
I read that antaacids make bile reflux worse...as well as proton pump inhibitors...I believe this is true....I took nexium after gallbladder surgery and ended up in the hospital for a week...still severe symptoms SEVERE burning in the chest and been on protonix, carafate, antaacids I believe I have bile reflux...
Hi Geo - I have been hearing negative things lately about PPI's. I wonder sometimes as well why I have had to take them for the last three years, when I was told it was just to help with the gastritis that occurs with the bile flare ups. PPI's really don't help bile, just acid. Which I guess it is helpful if one has acid reflux along with their bile reflux. However, it seems many diagnosed with BRD, don't have acid reflux...or the numbers are so few they haven't made it here to comment about it yet. I truly am sorry if you indeed have BRD. It is miserable, and I don't wish this on anyone. So many different things "piggy back" onto it, it makes controling the condition difficult. Endoscopy will tell you if you indeed suffer from BRD. I too have to deal with the extreme weight loss, and it is probably the most worrisome part of my thoughts when it comes to BRD. A Pharmacist recommended this, it might help you with the burning. It's my small miracle of relief, though it's not a cure. When the burning gets really bad, and I know I have taken all my doses of PPI, I take a couple tablespoons of Maalox. It seems to help, oddly enough. Check with your doctor to see about other medications such as Bentyl and Phenagren. If your stomach is in spasms the Bentyl will help, which in turn will help with some nausea. If nausea is severe, Phenagren will relief it. Spasms, and nausea can also help create that burning sensation. These should not be used on a daily basis though because Bentyl will constipate you, and impact fecal matter if you don't watch it. Phenagren will make you sleep, which if you have things to do...becomes a problem.
Each BRD sufferer has the basic criteria the doctors use to diagnose it, however, each BRD sufferer also has other things going on that are aggravating the symptoms. My MD made a good point, everything you feel, even if it's odd like an ear ache should be mentioned to them. Because most of the time you are treating your flare up, but also something else. I have noticed with me, every flare up I have had I have been on an antibiotic for something else going on. However, the BRD sufferer next to me, might not be. This condition is frustrating. I hope you don't have it. Please stop back or join the web page. Let us know how you are doing. The one purpose I had when I wrote the article, was for no one to ever feel alone with this condition.
Hi Feeling Alone - how are you? Have you had any luck with your tests and the supplements you have been taking?
I haven't gotten on for awhile, sorry. I spent 9 days in the hospital. I had gotten so dehydrated and the medications the doctor gave me poisoned me. It was a long nine days! I have gotten some results from the tests and found that I have some food allergies that I did not even suspect - oats, oregano, vanilla, and almonds. I also have a severe reaction to gliadin - a protein in gluten. I have been gluten free for a year. They have been testing me for celiac disease but the tests were determined to be invalid! Painful, but not valid because they were not done right. I visited a specialist at UMass Memorial in Worcester, MA last week. He determined that I have a bile issue - not sure if it's reflux but similar. He gave me a yellow powder to stir into water to absorb the bile. I have been drinking it for 4 days and have had some relief. He said I'd have to play with the dosage to get it right. I don't have it here or I'd post the name of it. The FNP at Women to Women did a lot of testing and found my good stomach bacteria to be missing so I am taking liquid asadophilus/lactobacillius to try to build that back up. She also prescribed two generic supplements, Uva Ursi, and another probiotic, for 30 days. And, she put me on a 6000 IU dose of Vitamin D for 8 weeks. I have a vitamin drink called Ultrainflamex but I can't tolerate much of it. I am slowly building more strength and I think the yellow powder is helping with the bile. I am also taking Bentyl which helps greatly with stomach spasms and Ativan for the spasms as well and for my nerves. I'm sure I'll have to work off that soon because it's addictive. And, then, the FNP said I'll have to be treated for an overgrowth of yeast. She can't treat that until I build up a little more. I am feeling a little better, hate taking all these meds, but want to get better. Some days are better than others and they really depend on what I eat. I can eat all the rice and chicken I want but have to avoid anything fried. I am investigating a diet that is totally grain free. I've done some reading about it. Not sure if it would help or not. Hope you are all well!
Hi Feeling Alone :-) Please visit the link below. We'd love to chat with you and maybe one of us can help give you some good ideas, or things to think about. We have missed hearing from you. Very glad you are out of the hospital, and able to say hello to us.
I am definintely feeling better. The yellow powder I'm taking is Cholestyramine. It has definitely slowed down the burning bile issues. (However, they gave me one form of this medication that had NutriSweet in it and it was horrible. I had to go back and ask for the non-sweetened one.) I am also having more food allergy testing done. The Uva Ursi that I'm taking is almost gone and it works to kill the bad bacteria in the stomach. When I finish that, I am going to work on implementing a stronger probiotic. At the same time, I am working to get off the Ativan and will take the bentyl only as needed. I feel like I'm mending and some days are certainly better than others! For me, controlling the bile was the biggest part of getting things under control. And, that wasn't easy. I've been reading that allergens in your body will get your liver to produce more bile to get them out. It's a vicious circle. I need to get the allergens out so that my bile production will slow down. And, of course, stress makes things worse!
Hi Feeling Alone - I am so glad you are feeling better. I have been trying low dose Xanax for about a month now, and have had only one episode where I had to take my stomach spasm meds for relief. I completely agree stress only makes things worse. I hope you continue to feel better. It does feel like an uphill battle sometimes....better days are coming....hope.....we must always have hope.
It is such a relief to read this...I'm 18 years old and am going through the exact same thing, so it's nice to know that you're not alone. I was just recently diagnosed with Bile Reflux and Gastritis. I had my gallbladder removed over a year ago, and was also diagnosed with IBS. What seems to work for you when trying to deal with this disease?
so there's no cure, i will live with this forever... there's no way i will have this horrible life.
i was diagnosed with bile reflux (duodenogastric reflux) this friday, i've been hoarse for 4 months now and i finally found out why, it's BILE, the dr found too much bile in my stomach and a problem with my pyloric valve and LES (i've never had any surgery) my symptoms are hoarseness, sore pharynx, bad taste in my mouth, yellow saliva almost vomit-like saliva every morning, i have swelling in my larynx but nothing in my stomach or esophagus also i have no pain there the only pain i feel is in the back of my mouth in my pharynx, i also feel bloated when eat but is nothing i can't handle also i burp more than normal but again nothing too serious, my problems are from the neck up, i also wake up with a congested nose and feel fullness in my right ear, everything started around the same time so i blame BILE for all my symptoms if anybody is experiencing something similar with throat symptoms please email me: neptunian808@hotmail.com i havent been able to find someone who has bile reflux with no previous surgery and also throat symptoms with no stomach or esophageal pain. My dr put me on nexium 40 mg in the morning cause he thinks im refluxing both acid and bile he also gave me a prokinetic drug.
this is an interesting article http://www.nytimes.com/2009/06/30/health/30brod.ht it talks about Roux-en-Y surgery so far i've only been able to find one person who had the surgery with good results...
i was diagnosed with bile reflux (duodenogastric reflux) this friday, i've been hoarse for 4 months now and i finally found out why, it's BILE, the dr found too much bile in my stomach and a problem with my pyloric valve and LES (i've never had any surgery) my symptoms are hoarseness, sore pharynx, bad taste in my mouth, yellow saliva almost vomit-like saliva every morning, i have swelling in my larynx but nothing in my stomach or esophagus also i have no pain there the only pain i feel is in the back of my mouth in my pharynx, i also feel bloated when eat but is nothing i can't handle also i burp more than normal but again nothing too serious, my problems are from the neck up, i also wake up with a congested nose and feel fullness in my right ear, everything started around the same time so i blame BILE for all my symptoms if anybody is experiencing something similar with throat symptoms please email me: neptunian808@hotmail.com i havent been able to find someone who has bile reflux with no previous surgery and also throat symptoms with no stomach or esophageal pain. My dr put me on nexium 40 mg in the morning cause he thinks im refluxing both acid and bile he also gave me a prokinetic drug.
this is an interesting article http://www.nytimes.com/2009/06/30/health/30brod.ht it talks about Roux-en-Y surgery so far i've only been able to find one person who had the surgery with good results...
Hi Feeling Alone... How are you feeling now? Are things still improving?
Dragonlady I just found this site today and so glad I did. When I read your opening post my first thought was "Exactly!" I've tried to explain my ordeal to others using some of the same language you used. Unfortunately other don't seem to get just how just how much you are suffering. I've been feeling stressed by lack of improvement and now depression. Neither seem to help the problem. I did read some, but not all the post. I had my gallbladder remove in Nov 2010. I developed pancreatitsis at the same time. I've still been having pancreas problems. A scope was done in Dec that showed I had BRD. As I was doing research to try and determine why my gallbladder went from being fine to only 10% function in a matter of only 3 weeks I discovered it could have been my birth control and had it been stopped there may have been no need to remove my gallbladder. Meaning my current issue my of been completely avoidable. I'm still on my birth control since my doctors either won't listen or acknowledge it could be and issue. I'm taking the birth control for endometriosis. I'm scared to stop without another treatment in place. I can't handle both painful conditions at the same time. I was wondering how many people on her that have BRD are also taking birth control? I have a feeling the birth control might still be a contributing factor. Has anyone on here with BRD been on birth control and then stopped and found any symptom relief? It's nice to know other truly understand what I'm going through. Disappointing to know I may have to deal with this for the rest of my life.
I am feeling better. Thank you for asking! I have good days and bad days but more good than bad so I am thankful for that. I am working with the Women to Women center and they have been so much more help than the GI doctors. I am taking L-Glutamine every day at least once and some days more than once. I am also taking a liquid probiotic daily. I am on a fairly high dose of Vitamin D and still taking Bentyl and now a lower dose of Ativan, which I hope to get off completely in the next few weeks. My stomach spasms have reduced and it seems that when they come back and the burning starts, it's food related. I am having more allergy testing done but know that I can't have gluten and have to be very careful with milk products that contain casein. I am eating salads again, which I love, and as long as I eat romaine lettuce and make sure the dressing doesn't contain gluten, I do well. When I get into bad foods (for me that means I have a sensitivity) the bile starts flowing mercilessly. I have to be really careful. No more coffee and only caffeine-free organic tea. It's hard to eat out. I was also told to not eat anything that lists more than 5 ingredients. That has been helpful. And, the cholestrymine powder helps shut down the bile. I've also read and have purchased Acacia powder which is supposed to do the same thing but is more natural. When I get some courage up, I am going to try it. Take care!
Dragonlady, I'm still surviving. I'm very sorry I have not visited your blog in a very long while. I'm sorry I've not been there for my fellow sufferers... I pray for y'all.
Like I said before, none of the prescribed drugs was able to help me - my condition was either the same or worsened - so I've decided to stay outta drugs and intensify my faith in the Lord who's able to do all things. I've been feeling better until just about four days ago when I started having this unconfortable feeling in my throat. I have dry throat lately and it also feels like something caught up in there; I'm yet to figure or find out what that could possibly be... I trust it's a symptom of BRD too.
Dragonlady, I will be more than glad to join your support group, especially in my capacity as a LONG SUFFERER of this horrible disease. Just send me the details and I'll pick it up from there.
May the Lord also protect you Dragonlady for being there for all these numerous sufferers all the time; you are more than a comforter for some of us. May the Lord also comfort you and heal all of us. I believe strongly there will be a miracle for all of us from the very one who created us. Once again, Dragolady, more grease to your elbows.
Hi God's Son....Just click on the link below this article to join the group. There are alot of remarkable people in there. I am so happy to hear from you.
Coming off of a recent flare up, I must appologize for not being here like I try to be. It's been a miserably hard time trying to manage it this month (had to start 2 Bentyl's now just to get any relief from the cramping pain in my liver)
Neptunian808, your symptoms sound like mine (the right ear and congestion) It makes my BRD so miserable at times I think my head will explode. Doctors keep plugging away trying to treat the allegies I suffer from. It helps with the ear and extreme sinus migraines, however it doesn't help the BRD.
Stacie, I have not heard anyone make reference to BRD and birth control. However, with BRD rule nothing out you consume (food, medications, etc...) Talk with your doctor to see if another form of treatment can be done for your endometriosis. The medicine might be causing your problems. Rule nothing out. Something we think might be minor, might actually be the cause.
Manuel - I am sorry you have to live with this condition. I hate it too. Just know you are not alone and we are here for you....especially on down days.
Feeling Alone - I am soooo glad you are feeling better. If you haven't already, please join the website. Your encouragement and hope can be very helpful.
CK - It's hard to say what works and what doesn't. Mainly because BRD changes all the time (it truly is different for each sufferer) You can eat a bland diet for a while and feel well. Then it doesn't feel good any longer. Same with meds. I just live each day at a time, and thank each good day, because I know many bad days usually follow. The best advice a GI doc gave me was "Don't give up the things you love". Meaning don't give up on life. BRD can bed rid you for days, and that's miserable enough. However, enjoying things you like to do keeps you feeling human, and helps you feel like you are still cabale of doing things. You rule your body....not BRD.
Thanks for the advice :D I'm sorry it took me so long to respond but I'm sorry about your job loss. I'm glad you have a great partner who understands your situation with your health. I think it'll be tough for me to keep a job so I'll just become a houseban (house husband) haha! :D I'm currently self employed, I give private computer lessons at home. I try to do what I can for now but the worst part is seeing my chances at obtaining the career that I want, slip away. =| But I am used to giving up certain things. As long as I have a loving partner by my side, and a family to emotinally support me along the way then everything else I give up isn't such a great loss.
I hope you're feeling much better nowadays :)
Thanks Efron....it's ok. As soon as I went on FMLA they started making my tasks extremely difficult (like lifting 50 lb. parts all day long). Nice of them huh?
Well heck yea! be a houseban...LOL that sounds cool. You are right. It is a very good feeling when you have a loving partner. My Matt doesn't know what do do sometimes when theres a flare up....but just being there sometimes means the world. Lots of hugs to them...they deserve them. :-)
Hope you are feeling better too. I am coming off a flare up. Just wish the stomach would stop spasms, but everything else is behaving for the moment. Which in our world can be a blessing....even if just a little one. ;-)
Hey is it possible for your pyloric valve to be damaged from just a stomach bug or maybe overdrinking alcohol one night? My doc said for me (I have bile reflux) that my pyloric valve is a bit screwed (i had an endoscopy), but i havent had my gall bladder removed or anything like that. He also said that it slowly recovers over time, and if i take Pariet it will fix faster. Is this true??
My pyloric valve isn't working right either. The pediatric gastroenterologist said that it could be a birth defect that just presented itself when I was 16 (I'm 22 now).
Hi Hamish - I am not sure if Pariet will fix a pyloric valve that's damaged. I will have to look into this and get back with you. Mine is damaged and I have had to live with this horrible BRD for 4 years now. It would be nice to think the valve can mend itself...would be a dream come true. Anything can damage it (but I have always been told it is a tough little valve and it takes alot to damage it.) I have beat my brain up for years trying to think what might have caused it. I did have my gall bladder removed, but I truly can't say the removal caused it, because BRD didn't show itself for 8-9 years. So something caused it. If you are taking Pariet, let me know how it works for you. I am very interested in discussing this option with my doctor. Especially since he isn't confident in the pacemaker surgery (too little case evidence to reveal if such an expensive surgery will actually work or not). Living with the damaged valve is miserable since you can't control the amount of bile that will backwash and hang out in your stomach. Drinking should be avoided...however, I like an occasional drink, and asked my doc...he stated a drink now and again shouldn't hurt. Just don't be drinking all the time, or avoid it, since it can trigger a flare up.
Hi Churro- I am so sorry you've had to live with a damaged valve for so long like I have. Do you feel like something is constantly stabbing you in the liver as well? I hate that feeling it gets so painful at times.
I don't really get any pain with it, just alot of burning.
My experience of good food/bad food.
BAD
raw garlic (even in small amounts.. BURNS!)
potato (you would think this would soothe - it doesn't)
chocolate (the WORST attack ever)
GOOD
four seed bread (something in it... linseed? sunflower? poppy? sesame?)
oats (anti-inflammatory, prevents bowel reabsorbtion so lower bile production)
Proton pump inhibitors (helps somewhat but i hate taking meds with side effects eg osteoporosis)
LOOKING INTO
chamomile
licorice
flax seed
Hi Penny - Thanks for your post. I noticed the garlic immediately....this for me is very BAD as well. Not only because it is put in many foods, but also in medications (sulfa medications), and products (anything that lists Sulfate such as shampoos, and bath washes, I am starting to check laundry soap now as well). I am allergic to Sulfa medications. It would be interesting to know if others BRD sufferers are also allergic (some not even knowing it).
Love chocolate....but you are right for some reason....it really hates my stomach. A peppermint patty sent me to the hospital with one of my very first attacks.
Chamomile tea is alright, but the affects don't last very long. It is pampering to drink though and when you feel really low with this, a little pampering does a nice job on your mood.
Great post...loved it! :-)
Hi
I have exactly what you describe and just had the second scoping. I had my gall bladder out a year ago. I have been back and forth to the doctor with not a lot of sympathy. Now they are talking surgery. To be continued.....
I have these exact symptoms. My doctors keep pushing it's GERD but none of the medications helped. I've had the nissen 3 times with no positive results. I have had gall bladder tests twice which came back normal. The last 2 scopes my doctor did he took biopsies of my lower esophagus because it was so discolored he was afraid I had cancer. It was negative. I have not been diagnosed with BRD but I'm leaning towards it. All of my gerd tests have come back normal but yet I still have severe erosion. It's gotten to the point I have applied for disability. Anyone receive disability for BRD? My attacks last for weeks to months and will clear up for maybe a week or two and back to bad. Sound familiar? I'm wondering if the doctor did a specific test for this since all of mine have come back normal.
Greetings everyone,
I have been gone for a while. I have had more good days than bad for which I give glory to the Lord.
I know everyone is unique and our challenges are not all the same but we do have one thing in common - BRD which means we all have varying degrees of "gutastrophe." Please check out Dr. Elizabeth Lipski's book - Digestive Wellness. She is clinical nutritionist and has suggestions that have helped me (chapters 9 and 10 are full of good ideas). She covers heartburn or gastric reflux, hiatal hernia, Barrett's, gastritis and more.
Some ideas that I have found helpful are: drinking more pure water 2.5 to 3 liters per day), healthy foods, slippery elm bark (in Stomach Comfort by ( ), ginger, folic acid, antioxidants, probiotics or yogurt, digestive enzymes, DGL (licorice), aloe vera, rice bran oil (added to my food or oatmeal), glutamine, primrose, borage, flaxseed oils (in caps available at Wall-mart), zinc and vitamin A, 2 mg of copper, 400 IU vitamin E, and B complex to name a few. Remember that you condition did not occur over night and it may take time to see improvement, but do not lose hope.
I keep raw almonds with me so when I feel the least bit hungry (this is when my burning starts) I munch on almonds and this seems to stop the burning for me.
I still have my gallbladder and have had no other surgeries except for having my tonsils removed as a child.
"Though my heart is torn, I still praise HIM in the storm." Blessings!
I had gastric bypass aith cholecystomy and app in 1980. Had dumping syndrome for several years and then just loose stools. Reflux?? started in early 90's getting worse with time, until nothing helped. was diagnosed with H pylori and treated for that. EGD and colonscopy showed erosive esphagitis. Again nothing mentioned about increased bile. I read report and asked Dr. about it and was told the PPI would help. It didn't. Maalox could have been water for all the good it did. then, I found RIOPAN. I keep it by my bedside and in my kitchen so it is close.
Began to have incontinent diarrhea in 2006. It was explosive and uncontrollable. I had to quit work and stopped going out. Am a virtual prisoner to my bathroom. I panic when I go out. Another colonscopy and EGD in 2007. Was told I had mild resolving colitis. Was prescribed Bentyl and nothing was said about the increased bile that was on the report again. My GP looked at me and shrugged.
I have recently changed Drs. after a 14 day nausea episode and a 10 day cramping episode. A family practioner. He has put me on questran. So far so good. I think I am in love with him. :).
I have just been diagnosed with Bile Reflux two months ago. I have had the symptoms for close to two years though. I am a strict vegetarian and because for most of the two years doctors told me I had everything from gastritis to ulcers and put me on acid reducers which provided no relief and have now caused me to be severely iron defecient.
My GI doctor told me to take Carafate for three months and eat whatever I want. He said it will heal itself. I have taken the Carafate for a little over two months now and until last week had no attacks.
Last week I had an awful attack which has taken a lot of the hope out of ever being okay again. My last attack was one of the worst ever. I immediately was sweating so bad over my entire body. I had such pain in my chest and back, like I was being squeezed to death, that lasted 16 hours. I throw up everything in my stomach until it is only dry heaving and I cannot even keep water down.
I still have my gall bladder. This all started after I had an emergency C-section with my 3rd child. Until then I was the picture of health.
The pain is unbearable and I am desparate to live my life again.
I read a paper on chinese medicine that said it cured 98% of its participants of Bile Reflux http://eng.hi138.com/?i123831 I also read another blog where a man claims he cured his Bile Reflux by a strict diet for a period of time. Another lady claims to have cured hers by taking Rhodiola Rosea. Does anyone have knowledge of someone who truly was cured of this? The man I mentioned who claims to have cured himself through diet said something that struck me. He said this is a condition so it can be healed. Maybe wishful thinking but I really want to believe him.
I am very sorry for everyone here suffering in this way. I am grateful to know there are people willing to share their pain in order to help others. Thank you all!
I recently found this and have decided to give it a try. Living with this is terrible. I want my life back. It is holistic and seems to really work. Maybe there is hope for us all!
www.HeartburnNoMore.com
Hi y'all,
Just wanted all of you to hold your head and keep your lights up. You are not alone!
I have bought the Heartburn No More eBook. It seems to make sense but I can't say for sure if it works yet. It is a whole program with different phases that take time.
I also have found an exercise called the Shaker exercise for swallowing that is used to strengthen the Upper Esophageal Sphincter and may have some success in treating this? I hope! Maybe we could strengthen the LES and have it back to where it used to be before we had this condition.
I hope this helps. Take care. :-)
I have been trying to work out what has been wrong with my insides for years. Had my gall bladder removed in 07 but thought my stomach discomfort was due to the chemo I have had. Over the years the discomfort of my stomach makes each morning a total misery. It has taken till July 2011 for a scope to be used and excessive bile was diagnosed. I have tried all the regular meds over the years and without success. Many cause additional headaches that it makes taking the medication useless. On going through most of these postings I have also discovered that my occasional dizziness is down to this to, what a relief! I truly wish there was something out there as trying to describe what your stomach feels like on a morning or during an attack is hard. I also have mesothelioma (cancer of the chest) which makes it doubly hard to separate the pain. Which is cancer and which is Bile. To be honest I didn't think this bile could be so dangerous and I wish to God I hadn't lost my gallbladder- even if there were stones that could cause problems, they surely couldn't be as bad as this, the 3 to 4 years of sheer h*ll that I have gone through and no end in sight. Good to know I am not alone but sad to know there are so many of us.
Hi God's Son... Have missed you! Glad you having some good days. :-)
Hi Everyone... I have been reading some of the posts. One thing that troubles me is that people keep mentioning heartburn. Let's not forget that Bile and Acid are 2 very different things. OK? You might control the heartburn, but the bile will definitely still be there. However, having had this little monster of a condition for so long, I definitely agree any relief is a very very GOOD thing.
Hi Dragonlady... Have missed you so much too!
To everyone else: Yes, it is a very painful disease and condition to live with, Dragonlady has appropriately described it as a "monster", but decide to take your life back and you'll surely have a good reason to live. Life's fun and trust me, I still enjoy every bit of it. Knowing that the Lord has not given up on me gives me a lot of happiness and reason to enjoy life. I do have bad days but on the whole I think I'm better than before - I'm not worse! I've learnt to rely on the Lord and I'm very happy to say that He is in control.
At first, I thought my whole world was coming to a halt. I'm glad to inform y'all that I'm getting married in less than two weeks.
Many thanks to Dragonladay whose blog gave me a lot of hope to start off with. When you are diagnosed with this monster for the first time, after reading all those horrible things about it, you may think ending your life is a better alternative. It's a real painful condition! Looking back - three years after my diagnosis, I think I am better now.
Hang in there, you are never alone.
Hi, just found this page and am so grateful to you all for sharing your experiences. It is now 2:30 am and I am WIDE awake after taking Reglan. For me the side effect is NO SLEEP. So I will stop it. Yesterday morning at 9:00, I cut the 5mg pill in half and still no sleep tonight. Why would anyone take this drug????
I haven't been diagnosed with BRD, but had an endoscopy 2 weeks ago and the DR found bile in my stomach. I thought for sure I had h-pylori. But the biopsy did not show it. I had my gall bladder removed 18 months ago and suffered with diarrhea (which was why they wanted me to have it removed, go figure) and was put on Welchol (3 per day). I tried that but it only made me sick, so I went to 1 per day and that was fine for over a year. Then lately I was having ulcer-like pain and was under a lot of stress. So, the endoscopy. Will insist on seeing a GI doc to find out if I do have BRD. In the meantime, I want to share that I get great relief with a heating pad on my stomach at night. Since we have to sleep elevated, I just lay the pad on my stomach and it relieves the pain almost immediately. Give it a try.
I haven't posted on this site for some time. I had good luck taking Cholestyrmine (questran) for some time. I even worked off it for the past four months but now the bile is back. It's horrible! The last major bout I had was also in the fall. For me, stress is high in the fall with my job and we eat lots of fresh vegetables. I am finding a direct link between bile issues and salicylates - found in aspirin, ibuprofen, aleve, and many foods like vinegar, honey, zucchini, fresh berries and more. I am starting a new diet with low salicylates and hope for some relief. The alternative clinic I go to says this stuff is autoimmune and triggered by stress as well as food intolerances. I've had lots of testing done to locate my food intolerances and know for sure that gluten and wheat grains are a big offender as well as nuts, especially peanuts and almonds. I am hoping for some relief with the low salicylate diet. I'll let you all know. I have learned that decaf coffee is low in salicyates but regular coffee is high. I don't drink much coffee but a little is nice. Also, creamers, like dunkin donuts kill me. However, I've found that I can use regular cream that has no additives. If you are intolerant to NSAIDS like ibuprofen and aspirin, you might consider checking your response to foods high in salicylates. Again, I'll keep everyone posted. The horrible stomach spasms and crazy heartbeat and weakness drive me crazy! Take care all!
Hi God's Son....have missed you too. Love hearing your words of hope. I have been so busy, and trying to stay healthy too. What a juggle some days! The good news I feel like I have some control back with my life. I am working, I moved across country and now that I am in a climate with less allergens (for me)...the flare ups are less frequent. Such is life with BRD, so even though I am enjoying good days...never trust that Bile. We think so much alike about the NOT giving up. The condition is painful and people forget Chronic. I guess that's what discourages me most, the Chronic part. I can't imagine something not having a cure, even 4 years later. However, it is not the end of your life. Each one of us has different things that trigger an episode. We need to pay attention to even the simple things and take action about it. How did we react to a med? How did we react to a certain food? Are you allergic to that food? What's in it? For me many things have garlic in it. Shampoos, food, medicines....hello? if you are allergic to sulfa meds.... stop and change these things to non sulfa and see if there is an improvement. The one thing BRD does do? It makes you become extremely aware of your body and what you are doing to it. I hate the stomach spasms, but rest and a Bentyl take care of that instead of frequent trips to the hospitals. I have not taken one anti-depressant in 2 years. So don't think every doctor has to prescribe them at will just because you feel depressed with this condition. I did opt to be a guinea pig and try very low dose Xanax, which has worked very well and I don't feel like I am so drugged I can't conduct a normal life. Also...remember we each suffer differently. Look at what your condition is and what is piggy backing with BRD. Manage all the symptoms. We can only keep hope and do the best we can. God's son... I love how you keep quoting my motto. Thanks ...because we aren't alone. Not any longer. :-) Hugs
Hi God's Son....have missed you too. Love hearing your words of hope. I have been so busy, and trying to stay healthy too. What a juggle some days! The good news I feel like I have some control back with my life. I am working, I moved across country and now that I am in a climate with less allergens (for me)...the flare ups are less frequent. Such is life with BRD, so even though I am enjoying good days...never trust that Bile. We think so much alike about the NOT giving up. The condition is painful and people forget Chronic. I guess that's what discourages me most, the Chronic part. I can't imagine something not having a cure, even 4 years later. However, it is not the end of your life. Each one of us has different things that trigger an episode. We need to pay attention to even the simple things and take action about it. How did we react to a med? How did we react to a certain food? Are you allergic to that food? What's in it? For me many things have garlic in it. Shampoos, food, medicines....hello? if you are allergic to sulfa meds.... stop and change these things to non sulfa and see if there is an improvement. The one thing BRD does do? It makes you become extremely aware of your body and what you are doing to it. I hate the stomach spasms, but rest and a Bentyl take care of that instead of frequent trips to the hospitals. I have not taken one anti-depressant in 2 years. So don't think every doctor has to prescribe them at will just because you feel depressed with this condition. I did opt to be a guinea pig and try very low dose Xanax, which has worked very well and I don't feel like I am so drugged I can't conduct a normal life. Also...remember we each suffer differently. Look at what your condition is and what is piggy backing with BRD. Manage all the symptoms. We can only keep hope and do the best we can. God's son... I love how you keep quoting my motto. Thanks ...because we aren't alone. Not any longer. :-) Hugs
really its a touching story,i can understand your problem, your post is really informative.Thanks for sharing.
OK. So I saw the GI Dr. today and he was not much help at all - saying not only that I didn't have Bile reflux but there really isn't any such thing. I cannot/will not take Reglan as it is so dangerous, but, nevertheless, the treatment of choice by GI docs.. So, it's off to find another doctor. In the meantime, this is the regimen that I have been following and it helps quite a bit. First of all, my stomach is never empty - I have Ritz crackers with me at all times and I eat 3 - 4 small meals that are low in fat (fat increases bile production). Then, at 8:00am I take a 625 mg WelChol (NO GENERIC!!!!), at 10:00am a carafate at 2:00 Another WelChol, at 4:00 carafate, at 7:00 Aciphex (NO GENERIC) at 10:00 pm carafate and around 4:00am another carafate. I sleep with a heating pad on my stomach - and sleep nearly sitting up. So far this is working. I am going to start another Welchol in the evening since it binds with bile to absorb it. I have been my own doctor these past months. It really scares me how little the docs know about this. If THEY had the sotmach ache, believe me, they would find a treatment/cure.
When I find another doctor, I will insist on an Impedance/ph test to find out once and for all what's going on.
I am so glad I found this discussion, but I am also now scared to death frankly. Had my gallbladder out almost exactly a year ago, and was flying along feeling the best I had in a long time, with only cheese being my enemy, until a couple weeks ago. Started with a feeling of nausea and gassy up under my ribcage, mild, nothing too alarming, took Gas X. Now for the last 5-6 days I have the same symptoms (and more) that I had before the gallbladder was taken out.
Constant taste like after-vomit in my constantly watery mouth, gnawing/burning pain (not too bad yet, but constant) up under my ribcage, pressure & bloating, feel like stuff wants to come up my esophagus. No heartburn at all, and the nausea is gone (wouldn't mind just having THAT back). No OTC acid reflux stuff worked (imagine actually hoping that you have GERD), OTC makes it worse. So........yeah, I'm thinking bile reflux and I am thinking I am not the kind of person who can deal with this. Making a gastro appointment tomorrow. Not hopeful at all.
Is Welchol the same as Cholestyramine and Questran? I find that those bile binders help a lot when my stomach flares. To lala15108 - you have the same symptoms I did. It took me months to get to a GI specialist who took one look at me and said I was poisoned by my own bile! As soon as I started the Cholestyramine, I started to feel better. Now, almost a year later, I have gained a few pounds. The bile strips your body of nutrients! I hope you can get help more quickly than I did. To DragonLady - I am so glad to hear you are doing better! I have also found Bentyl to be helpful during flare ups! Take care. Your wise words of wisdom got me through a very dark time!
Yes, Cholestryamine is the generic of Welchol - and everyone I hear from says the real thing is worth the money, Sometimes it depends on where the generic is made....And, I did substitute one of the carafates for the Welchol and I had a great day. So, now I take 3 Welchol and 2 carafate and one Achphex a day. I space them out so they don't fight one another - the doc says they won't, but the pharmmacist (who I believe more) says they can. I see the GI doc in 3 weeks and see how I'm doing. He was going to try to find Motilium for me - not available in the US, but in Canada. Will let you know.
lala, don't be frightened, you have a journey to make. But, take heart, you won't have to rely on those pesky doctors as you will educate yourself about this disease and find what works for you. And, at times, they will assist you with writing scripts. And, listen to the pharmacist. Believe me, the heating pad on my stomach at night is a godsend. Try it.
Thank you for the words of encouragement. I called this morning and have an appt for Nov. 3rd, which is better than I dared hope for I guess. Believe me, I will definitely go in to the appt. as educated as I can get, with a list of questions, medications I am willing or not willing to try (like that Reglan stuff), and hopefully the doctor will have an open mind and actually listen to my words. I'm guessing bloodwork and a scope would be first on the list.
My heart goes out for all of you. I am so glad I am not alone with this. I am going through the same things as all of you. I had my gall bladder out almost 2 years ago and I have had nothing but problems since. I have be on all the same meds as most of you and nothing has helped me. The most frustrating part of this is the bile. I have bile burning my mouth everyday and somedays it's so bad I cry. I have tried everything possible and nothing has helped me. Everything the doctors told me to do I did. I am at my wits end with this BRD. I am a 30 year old female with BRD, chronic vertigo, migraines, and undergone a hysterectomy 4 years ago. I am so sick of being sick.........It's funny the doctors tell you to avoid stress but when you are not responding to medication and sick everyday how are you suppose to avoid stress. I don't know how you all deal with this for so many years. I have lost so much weight from the vertigo and BRD I don't know what size I am in anymore. I go to see the GI doctor today. At this point I will do anything to feel somewhat better.
A really great resource is the Mayo Clinic website: mayoclinic.com/health/bile-reflux. There is a lot there - you have to navigate through it, but it explains the disease and offers suggestions. Worth your time.
Chey11 ((((hugs)))))
Hi chey11 and lala15108.
Hang in there - you will find the treatment that works for you. Remember you want to absorb that bile that's been building up (your liver has been producing bile but since there is no gall bladder to hold it, it's rather free ranging throughout your system - that's your goal - so either Questran or Welchol (it's what works for me). They act as a sort of "kitty litter" to absorb the bile. You may have to take a lot at first. And, remember you don't want a generic - you want the brand name. So ask the dr. to put DAP (dispense as prescribed) on the script.
In the meantime, keep something in your stomach at all times - just soda crackers - I have Ritz crackers with me ALWAYS. Avoid anything fatty like the plague as fat tells your liver to release more bile...... Good luck.
I know how you all feel, I have just been after a year of testing been diagnosed with Bile Reflux and the pain cannot be described and the constant burning in the stomach. I haven't lost weight as for the 1st time in my life I am craving sugar and I seem to be able to suck on candy without too many problems, but eating is NOT a good experience. Chocolate is a killer however and my good morning coffee is hit and miss weather it will stay down. I told my husband I haven't thrown up this amount of bile since I was pregnant many years ago. I had a tumor on my gallbladder and so they removed it hoping this would settle things down however it didn't help at all and now I read on the Mayo clinic website that Bile Reflux is common among people that have had them removed, so I sure hope this doesn't mean mine is about to get worse. I agree with always having crackers at your side. Stay away from deep fried foods/fatty foods, or foods that are rich. I had never even heard about Bile Reflux until my surgeon stated I had it after an endoscopy, but he didn't go into any explanation what it really is, I was diagnosed with Acid Reflux years ago and have been taking Nexium for it and my family doctor out me on a medication to speed up the rate of which the food is digested.
Good Luck to all of you, I sincerely hope you can determine what works for you and you will be in my prayers. This is a horrible painful disease that none of us deserve.
Hi nanaof5.
Would you mind sharing what medicine your dr. prescribed to speed up the rate of digestion? And, did it work? I tried Regaln but was unable to sleep. Thanks
You have to try Triphala. After just my first capsule I felt so much better - and every day I feel better with less noticeable pain in my stomach. This has to be a miraculous combination of herbs. I will now concentrate on using less carafate. Triphala helps with motility and emptying of the stomach - the bile, that is.... With the bile getting gone, the pain will be also. Go to the health food store and buy some - for $12, it's worth a try.
I am so thankful to have found this website. I have been suffering for years with BRD.Just diagnosed 4 months ago after having gallbladder and and then had an upper scope done. I have lived this for 26 years, went through pretty much same stuff everyone else has and have somehow managed to stay somewhat sane.Amazing the not so big deal attitude of most physicians when you are finally diagnosed with BRD. They surely do not understand how sick a person can become with this horrible disease, it can be disabling.The nausea, pain, horrible taste in the mouth, the bowel problems and all the other symptoms. Looking forward to more posts and chatting. God Bless all of you
Thank you so much for posting about bile reflux. You describe exactly what I've been going through for years. After years of pain and thousands of dollars worth of medical tests, I finally referred myself to a gastroenterologist who diagnosed me with this. I'm hoping to be able to start eating again and gaining some weight. Best of luck to all of you!
Does the bile reflux come and go for you guys, or is it all the time? I had made the appointment to see the doc and schedule a scope, and all my symptoms went away (that was the end of Oct/first week of Nov), so I cancelled the appointment. Now for the last day or so I am beginning to have the throw-up taste again, and nausea, not to the degree I did before, but it may be building up again. I am wondering what I did to set it off, or if I have a peptic ulcer that is getting aggravated by ibuprofen (which I had stopped using after that first episode, but took some of several days ago for two days in a row). Guess I shouldn't have cancelled that appointment, huh?!? I had hoped I was just going to have that one flareup and would be fine once it went away. I thought if you had the bile reflux that you would have it all day every day.
You need to have the endoscopy done to set your mind at ease. It doesn't mean there is some magic pill to cure what you have, but putting a name on it will help. I still take my 8 pills a day - 3 WelChol, 3 Carafate, 1 Aciphex and 2 Triphala (all at least 1 hour apart)and I have controlled the symptoms. I watch what I eat and have crackers with me at all times so my stomach is never empty. I have added strawberries and they REALLY help as do hard boiled eggs????? And I sleep with a heating pad on my stomach and use a wedge pillow.
Will see a Dr. at Cleveland Clinic in January and see if they can put a name on what I have. The docs here in my town are stumped. So, onwards and upwards. At lease I'm not in pain, which, I hope means no damage is being done.
But, with all I do every now and again something sets it off. Usually chocolate, lemon or a glass of wine - all my weaknesses.
I agree , you must have the scope done. My symptoms have varied, but most of the time are constant when I have a flare up. My most aggravating symptom is the horrible/rancid taste and at times appears even as a smell or foul odor. I thought that I was crazy at times, but my wife can also smell the odor as well.I was concerned I was smelling something nobody else could, not that the odor is a good thing, but at least I'm not smelling something nobody else could smell. The Doctor that performed my upper scope informed us that I had a lot of bile in my stomach and that is why I have the taste and smell.I had my gallbladder removed a few months ago and my symptoms only appear yo have gotten worse.
Wish you all well, nobody deserves to feel like this.
Does anyone else have any food intolerances? If I ingest even one drop of dairy, I am messed up for days with bile backing up from my stomach onto my tongue.
Has anyone else tried Tryphala? I am a bit hesitant to try it because I've had bad reactions to the other herbals I've tried.
I'm really anxious to find ways to manage this condition because this current flare up has lasted almost a year. I've had to cut almost everything out of my diet; right now I live on scrambled eggs, chicken breast, cooked carrots and peas, sweet potatoes, oatmeal and dried fruit. The only medication I'm taking is carafate.
Any suggestions would be greatly appreciated.
I had an awful reaction to dairy and greasy foods such as bacon after my gall bladder was removed. Since I have been taking Welchol - 3 a day, the diarrhea has disappeared - if I want to eat dairy (like ice cream) and not worry, I take a Lactaid right before I indulge and I drink Lactaid milk instead of regular milk. Then, I read about Triphala (helps with motility) and tried it - I felt better almost immediately.
So, now, my regimin is: 3 Welchol (to absorb the bile), 3 carafate (to coat my stomach), 2 Triphala (to move the absorbed bile out of my stomach) and 1 Protonix (for acid reflux) a day - a lot of pills, but my symptoms are all but gone. And I take them at least an hour apart so that they don't interfere with one another. Also, I avoid chocolate, greasy foods, peppermint, and lemon and I never let my stomach get empty. I try to eat a piece of bread before every meal. And, I have crackers with me at all times. I sleep with a heating pad on my stomach and with one of those wedge pillows.
I cannot recommend Welchol more highly. And, not the generic, but the brand name - worth the extra money as the generics aren't reliable - depends on where it's manufactured..... need I say more?? I think it is a MUST for those of us with no gall bladder - because, whereas the liver is still producing the bile, it cannot be stored in the gall bladder, so free ranges throughout our bodies, does not play well with greasy or fatty foods and sometimes pools in the stomach. So, the Welchol acts as a sort of kitty litter and absorbs it. The Triphala helps move it along for elimination. Other motility drugs are really dangerous, so the Triphala is a great alternative.
I believe with this disorder that we have, we have to help one another as the Docs either don't believe us or don't know what to do - every one is different, so you have to do your homework...
Good luck.
Thanks for your advice. The fact that you feel okay gives me hope. I'm down to 93 pounds and have felt like hell every day for the past 10 months.
What amazes me is that this website is the first place that I've heard of Welchol. I had my gallbladder out in 2000. When I told my PCP that I was having problems with stomach cramping and violent diarrhea, he told me that it was impossible that the cholecystectomy was causing my problems. I learned to mostly control the diarrhea by avoiding certain foods or eating them in small amounts later in the day.
My problems with bile reflux started in 2009, but I wasn't diagnosed until now. The bile reflux caused severe gastritis and mild pancreatitis. My PCP kept telling me to take OTC antacids - I'm looking for a new PCP. I finally referred myself to a gastroenterologist who diagnosed me, but he hasn't given me any medication either. I have a follow up this week and am going to ask for Welchol.
My regimen right now is a severely limited diet, 3 Carafate a day and I've found that a multi-vitamin helps some with the weakness.
I agree that we have to help each. This website has already helped me so much by validating what I've been going through.
I heard about Welchol from a friend who was taking it - my doc hadn't heard of it. And it has been a godsend. And, remember get the brand name, not the generic. And don't take it within an hour of anything else. It will seem you are taking a pill every time you turn around, but if it helps get rid of the bile without causing something worse, do it. I also have switched from Aciphex to Protonix for the acid reflux that I have and that is REALLY helping. I almost feel normal. As long as I take the pills, that is.... Have started drinking Fruit2O, Natural Strawberry and it goes down very well with all of the pills.
I am feeling a lot better. The GI doctor put me on Questran on a trial basis for 1 month only. I take 1 scoop at 6:30 am. My stomach does not hurt nearly as much and I am able to eat more. My energy level is a lot higher. I still have problems with the bad taste in my mouth and my tongue feeling irritated and I notice some bile in the afternoon. Hopefully he will have a fix for these issues at my follow up appointment. All in all, I am thankful that I feel so well after almost a year of feeling horrible.
So happy for you. We are on a journey and will eventually find a fix that works for each of us, I think. I have cut back from 3 Welchol to 2 and that has stopped the bloated feeling. Also, a Carafate every 6 hours to keep my stomach coated and the Protonix. See my dr. on the 16th for a referral to Cleveland. I just want to put a name on whatever it is I have....
I had my gallbladder out in 2002, after vomiting bile all night. Looking back, I think I just had bile reflux and didn't need the gallbladder removed. Another serious bile vomiting attack in 2009...endoscopy revealed ulcers and multiple erosions. Had severe symptoms each summer from June to October...put on all kinds of standard reflux meds. Reflux was so bad it burned my vocal cords three summers in a row and gave me total laryngitis. This summer...another endoscopy showed massive bile staining of the stomach and bile reflux. They had to aspirate all the bile out of my stomach there was so much. When it gets bad...I sleep in my recliner. No bed wedge is high enough to stop the bile from burning your throat...just get a good recliner and sleep in that. Also, my gastro doctor told me when the burning gets bad, to eat white bread. (I have huge reactions/allergies to many medications) Whenever I feel severe burning and think I'm going to vomit, I eat a piece of white bread and it stops immediately. I found a homemade bread place that makes it without preservatives and very few clean ingredients. It has fewer sides effects than any medication. It must work like a sponge to soak up the bile. One other weird suggestion that has worked 99% of the time: my doctor told me to take a few sips of regular Coca Cola for nausea. It was originally an anti nausea drug years ago and the gastroenterologist said they used to sell the Coke syrup for nausea in the office. Can't be Pepsi (artificial flavoring and preservatives) Can't be diet...has to be regular Coke. Between those two things, I haven't vomited bile in 2 years. I still would like to know how to stop this thing completely and understand why this is happening. My gastro doctor wants to do an autonomic neuropathy test. I can hear the squirting liquid coming into my stomach...then I know it's coming.
I agree with "quiltinfool"...never let your stomach get empty, Welchol, piece of bread...those have all helped me. Vegetables trigger severe symptoms with me as do most fruits. Before I had this, I ate lots of fruits and vegetables and took lots of supplements. My gastro doc thinks the supplements combined with the bile caused my ulcers and erosions. So...I take very few supplements now. I'm glad I found this group....not many docs know about this.
Sjogren's! Yes, one doctor was thinking this could be primary biliary cirrosis due to Sjorgren's which destroys the bile ducts. Everyone should be tested for that. If the bile ducts don't close properly, that could explain the flooding of bile. Sorry I'm posting so much, but I just found this group :)
Had a CAT scan last week and it showed nothing. So, have my referral to Cleveland Clinic on Jan 31 to see one of their GI docs. Hopefully they will put a name to this and come up with some other treatment than Reglan - these docs in Youngstown are still playing that same tune - but I will not take it. They say the Tardive is only with long term use. And I ask if I will ever be without this "motility" problem and their response is probably not, so I say, then I will be a long term user, No? Their answer is yes. So I asked the last doctor if he would let his daughter, sister or mother take it and he said probably not.... GEEEEEES!!!
At least for now I can control the symptoms with carafate, Welcol and Protonix. And diet restrictions as noted above. So will wait and see. But I will not give up. I will have a name to this and a reasonable treatment - even if I have to drive to Canada to get the domperidone myself. That is if i can get a US doc to prescribe it.
I also have been diagnosed with Bile Reflux. When I first started complaining about my stomach, they tested me for gallstones, appendicitis and all kinds of stuff. I finally went to the hospital and fun, fun, fun, had a tube shoved down my throat, although I was asleep. Yep, confirmed my bile goes up instead of down. Every single day I am sick. Last night my boyfriend took me out for dinner. I hated what I ordered, so ordered a burger, that tasted disgusting, almost threw up from the smells of other people's meal. I'm starving most of the time, because food smells and tastes odd. So I'll force myself to eat so my stomach stops growling, but then every swallow is a struggle to make sure I can keep it down. Mind you I hardly ever throw up, it's the other end of my body that responds to the food in my belly. It's worse when it's empty, but when you feel sick all of the time nothing is appetizing. Meat especially turns me off, and taste aweful. Pork doesn't seem to bother me, nor do fruits, vegies, or cereals. The stomachaches actually wake me up at night, and as long as my stomach is hurting I can't sleep. My Dr. prescribed Nexium and Domperidone, which of course I haven't been taking lately. The Domperidone is suppose to be taken three times a day before meals, but it made me go to the bathroom too much, and not number 1. The pharmacist said there is no set rule to taking Domperidone and that I should work with it to see how I react to it. I only need one each day and try to take it before the biggest meal of the day. As my doctor said foods with fat content are what triggers the bile. Bile breaks up the fat in the food. There is no cure, or lifestyle change that makes it go away. It can only be managed. Imagine feeling sick every single day, several times a day, and sometimes severe pain. I hate this.
Hi, Laurie
If you're not taking Welchol or Questran and Carafate, you need to. Carafate coats your stomach and Welchol or Questran soak up the bile and stops the bile salt diarrhea that you're experiencing. Do not let your stomach be empty - just a cracker every so often. And determine the foods that bring on bad results - for me it's chocolate, garlic, sometimes dairy and always anything greasy. So, I avoid them. Everyone is different. Sleep on your back with a wedge pillow and put a heating pad on your stomach. That and a carafate and you should not have any sleeping problems. Good luck. You can control this with life style and diet changes and if a someone told you otherwise, you need a second opinion by a GI doc.
Hi i have just been diagnosed with BRD and first I would like to say THANK YOU to dragonlady, I had never heard of this disease before and my doctor was not very informative,I had nowwhere to turn so I started with the internet and lucky for me found all of you. My heart goes out to each and every one of you... I have so many questions. First let me tell you of my story, I had been treating myself with prlosec I thought I had acid reluex and I do, but had no idea about BRD, i was sometime having alittle horseness, I saw on Dr. OZ that can indicate cancer in your throat, so I made an appt. with a GI. he did the scope and when I woke up he told me everythling looked fine and I would need to see him in Two weeks to go over the results of the biopsy. I go to the appt. and he says that I have BRD. I have some imflamation and perscribed Carafate to "heal that".and did I have any questions.. Never heard of this so I had no questions, on the way to the drug store I had alot of questions creep into my head,but they were not much help but far more than the Dr. After reading all of so many peoples comments I have yet to understand why I don't have most of these symptoms, I do feel alitlle sorness in my upper stomach after I eat, but nothing to bad, do you think it is because I was diagnosed so early and all the terrible symptonms have yet to come?? you are all so informative and have been through so much I wish there was some kind of cure, so I guess my first question is do you think that I am living with a time bomb. I have today started a journal of what I eat and how it affects me if it does. I guess I just don't know what to do
Hi my name is Brenda and I had my gallbladder out in 1996 and for serveral years I was fine or I thought I was anyway but about 5 yrs.ago my life has changed. bloating, gastritis,(burning to the point where i lost 30 pounds) I got my diet under control and my symptoms got alot better but i gained my weight back and i wasnt watching my diet very good so my symptoms came back but this time i also felt very sick at my stomache. It is horrible. Bile taste in my mouth. I havent threw up yet thank god. Now im back to sguare one to try and get my life somewhat back. Its been a nightmare.
Hi, I'm not sure if I have BRD or not. Get most the symptoms explained on here. Bile was first found in my stomach 9 years ago when I was 19 then every 18-24 months I get it back again with the pains,feeling bloated and weight loss.
Does anyone think I may have BRD?
WOW! I am so sorry that this has happened to you, but thank you for sharing. I think that this may have happened to me years ago. When I was 15 years old, I got very, very sick. All I knew is that my stomach constantly hurt and I couldnt eat. Literally couldnt eat...as in nothing would stay down. Of course, I had those doctor visits where they talked about "are you sure this isnt an eating disorder?" "Are you anorexic?" yada yada yada. NO, I was fat then, but I wasnt starving myself. I was literally STARVING! I now have a soft spot for anyone that doesnt have food to eat or has trouble eating. The feeling of starving is an ugly one.
I eventually had an endoscopy done and they saw bile collected in my stomach. Until I saw this post, I never knew what it could be! So for the past 15 years I have been wondering, "What the heck was that?!" I do have to say though, it was sure way to lose weight! haha I dropped 50 pounds in three months. That certainly helped my high school career. But would I ever choose to do that again? Heck NO!
I havent had another occurrence since then, but occasionally I get that strange unexplainable pain in my gut. I just hope that for me, and for everyone else who has experienced this (or continues to) that it will only get better.
It's taken me a few hours to read most of the posts. I must say "Thank you", Dragon lady for creating this site.. It is such a blessing to know we're not alone.. My story is so long and complex.. I can relate to every one of you. The frustration, the isolation and the constant quest for some sort of relief.. Some form of quality of life.. I too had my gallbladder removed. My physician had it removed because of a virus I contracted. This particular virus is called Enterovirus. It is found in the stomach, the brain and muscle. Dr. John Chia, an infectious disease specialist, discovered this virus in my stomach. It is a dibilitating virus that has turned my life upside down. He felt that it had spread to my gallbladder. I was having so many problems with my stomach. Hospitalizations, and finally surgery. I had a few weeks pain free. Then suddenly all my symptoms came back with a vengeance. I'm not only referring to the bile reflux I had finally diagnosed. All my other ailments too. I have CIPD,CFS and others. BRD is a living hell.. I too have tried many of the medications, diets, etc you have all mentioned. I wish there was an answer to all who live with this.. Hope and persistence is what keeps me going. My heart goes out to you all. It is a scary place to be
hi
i had my gallbladder removed in 2008 and 2 years later i have many problems with my stomach just like most of you.
i am always so bloated even when i get up in a morning horrible taste in the mouth all the time, cramping in my stomach and also burning in my upper abdomen.
i have been diagnosed with bile acid malabsorbtion and my gastro gave me questran, it worked for the diahreaah problem but i couldnt stand the side effects so now he told me to try welchol, does anyone know if it works and also are the side effects the same, as if they are i wont be able to tolerate them and i dont want to live like this anymore
Hi everyone... sorry for the long delay in posting. Haven't forgotten any of you. Been on my website/support group monitoring and helping people like ourselves. Please if you haven't joined yet, click on the link and do so. There are so many remarkable people there. Everyone who has thanked me...YOU ARE SO WELCOME and HUGE HUGS TO YOU ALL. I never want any of us to ever feel alone again.
Hi, Chillijava, I have been taking Welchol (not a generic - the real thing)for about a year and it works great for the bile salt diarrhea - I can eat anything now. I take one in the am before any food (with a cracker) and one before bed. However, my new GI Doc wants to switch me to Questran - says it is better.... but what are the side effects you had? Before I begin I would like to know. And, I wonder about drinking this powder - what does it taste like? It would be much harder to take along with you - Welchol is a pill - just pop it in. Any help would be appreciated... Thanks.
hi quiltinfool
it tastes very gritty and made me feel like i wanted to throw up, i also got really bad griping and bloating, it did stop the no 2's though.
i have got to try the welchol now so i hope it helps fed up with a griping sore stomach etc
did you have any effects? with the welchol and if you did how long did they last
No ill effects from the Welcol - except I can't take it on an empty stomach. And it has to be Welcol - not a generic. It's worth the expense.
So, here's my regimin: The times are approximate: 7:00am - 1 Welcol (625mg) and a cracker; before breakfast sucralfate (1gm); before lunch sucralfate, before dinner sucralfate, 7:30pm Protonix (40mg), 9:00 Welchol. My stomach is never empty - I have Ritz crackers with me at all time. I sleep on a wedge pillow, on my back with a heating pad on my stomach. With this regimin, I can control the symptoms.
I have no idea why the DR wants me to take the Questran, but when I get back to Ohio from CA, I will try it. I don't relish the gritty taste and nausea - but maybe I won't have that.....And he wants me to stop the carafate - that just scares me. But, he's at the Cleveland Clinic and so I'll give it a try - also wants me to take 2 Protonix - 40 Mg each, one in the am and one in the pm. If I don't like this, I'll ask to see another GI in his group. I will keep going until I find someone who will help me.
And, I'll try the ginger, thank you.
hi everyone! i was diagnosed 1 1/2 years ago of bile reflux and acid reflux after they took my gallbladder by mistake,i took carafate for 6 mos and changed to pariet 20 mg, took pariet for year... my symptoms are down to 15%, its been 30 days without pariet and carafate but just digestive enzymes and lots of raw food...try kangen water 9.5ph, wil not cure but wil definitely help a lot..gudluck
Questran has helped me tremendously. I mix it with 4 ounces of water and have no problems. The taste doesn't bother me; at least it's better than the horrible bile taste I used to have. It's solved most of my bile reflux problems. My GI doctor told me to stop taking Carafate because it wasn't helping me. I was nervous at first about stopping it, but found he was right. I am still cautious about my diet; I avoid dairy and greasy foods. I've gained 1 1/2 pounds and feel much better. I would definitely recommend taking the Questran.
well i started the cholestagel yesterday, my doc prescribed 2 625 tablets twice a day, but i am very sensitive to meds so i have been taking only 1 in a morning as i know some of you only take 1 a day.
today i am very bloated and still having griping pains after eating but so far no d.
anyone know how long the side effects last for as i am going away in 2 weeks and would like to feel better and i dont know whether to up the dose
I took only one WelChol - a choleststagel type product, but it wasn't enough - I went to two a day. Now 3 a day - 8 hours apart. And take this med with a cracker - it doesn't like an empty stomach.
I also stopped taking the carafate and find no real difference. SOOOOOO three less pills a day to take. Now I take 3 Welchol and 2 Protonix a day. I can live with this. Still a little stomach discomfort. But if I stay away from wine (BOO HOO), garlic and raw onions, I barely have any discomfort at all.
I will see my Cleveland Clinic GI doc once more - but I think I will see a nutritionist when I get home in the spring. The docs don't seem to know what this is or don't want to admit it is really happening to us. Perhaps because it was all caused by gall bladder removals and they don't want to admit it. Unless you press them on the subject......
It is so nice to read all these comments and know that you are not alone.
I was diagnose with mild bile reflux .the doctor revealed that this reflux is cause or is suspected to be an effect from a gallstone that is in my gallbladder. a have done an endoscopy which revealed the bile reflux in the stomach. I have done a ultrasound which diagnose the gallstone that they mentioned is 2mm in diameter. I used to suffer from burning in the stomach and back pain that ended me up at emergency all the time where they would just give me pain killer. presently the doc are recommending for me to take out my gallbladder but i am not sure if i want to do that .as my medical history is that i am a born jaundice baby and as a baby i underwent blood transfusion. I was suffering from a lot of pain then i was diagnose with cyst on my two ovaries and i later underwent surgery for complete hysterectomy. I am now 42yrs old diabetic and is now told that i most removed my gallbladder. I also stool blood after having diarrhea of yellowish stool.What is your suggestion as to what i should do in regard to removal of my gallbladder.
I have been recently diagnosed with BDR. I have been living with it for about a year and it was a living hell utill I was diagnosed. Im 13 and it has got in the way of my life so much I'm on medication now so im determined to not let it get in the way of my life anymore. Im so pleased you have written about this because when i was un diagnosed i would search on the internet my symptoms and reading about people with similar symptoms made me feel realived and not so alone. Also reading about other people with BRD now makes me realise that im not alone and there are other people out there like me.
The doctor put me on Welchol it's been a miracel drug for me! No side effects at all and I have a normal stomach again and do not have to map out bathrooms where ever I go. Look into it has helped so many people I have run into that has the same Bile reflux problems.
I'm so happy the Welchol is working for you. I swear it is a miracle drug for those of us with BRD. Just don't let them give you the generic. It depends on where the generic is made. Just have the Dr. write DAP (dispense as prescribed) on the prescription and you'll get the REAL THING. And it's worth the money.
I take 3 a day - about every 8 hours, and I still take the Protonix for the acid reflux. But, I feel really normal. Still can't eat chocolate. And wine is problematic at times (I have a secret stash of carafate when I want to imbibe a bit. Blush).
Still going to see the holistic doctor in April. Seems we're never going to be without this awful disorder, so we have to find out how to manage it so as not to cause other problems.
I'm so happy the Welchol is working for you. I swear it is a miracle drug for those of us with BRD. Just don't let them give you the generic. It depends on where the generic is made. Just have the Dr. write DAP (dispense as prescribed) on the prescription and you'll get the REAL THING. And it's worth the money.
I take 3 a day - about every 8 hours, and I still take the Protonix for the acid reflux. But, I feel really normal. Still can't eat chocolate. And wine is problematic at times (I have a secret stash of carafate when I want to imbibe a bit. Blush).
Still going to see the holistic doctor in April. Seems we're never going to be without this awful disorder, so we have to find out how to manage it so as not to cause other problems.
Another way to help bile reflux is Ayurvedic or Tibetan Herbal medicines. When nothing worked for me, Ayurvedic and Tibetan herbs helped me control my bile reflux. I avoid eating fried and spicy food always and take the medicines regularly. It is usually chronic and you always have to take care of your diet. I know how painful it is to go through when you get bile reflux. And I got relief to a great extent. If anyone needs more information about these options feel free to mail me at vijitaaggarwal@gmail.com
I have been suffering all the symptoms of GERD for about 3 months. In the last three weeks the symptoms became much worse. Severe pain (burning in my chest and shoulders). Also sudden biliousness and sometimes vomiting. All this making working very difficult. I changed my diet, eating non acidic foods, gave up coffee and alcohol, took apple cider vinegar, ate dinner 3 hours before bedtime. My reflux just kept getting worse. I was sleeping, (trying to sleep), with a wedge of pillows under my upper body. I was also taking gaviscon and digestive enzymes. Nothing helped. Yesterday I had a meeting near my old chiropractors office. I hadn't seen him for a few years. I remembered he had a chart on his wall referring to back problems and which organs were affected by areas of the spine being out of alignment. I called and got an appointment straight away. I told him about my reflux and other problems. He looked at my spine and made some adjustment. When he pressed on my upper back, he had two attempts, suddenly my back went crack. He said that's it. He was right. Within an hour my symptoms had vanished. Now 24 hours later, I am still free of all symptoms. I am amazed. I am not saying this will work for everyone, but I can say it seems to have had a profound affect on me. I will still keep on the good food and eat earlier. I never really believed that back problems can cause severe side effects like reflux, but now I am absolutely convinced. If anyone would like more info re my story please email me at david@whiz.com.au
Has anyone successfully applied for, and got disability due to Bile Reflux Symptoms? I've had horrible symptoms since my gallblader was removed...and I can't get the strength or control my symptoms long enough to return to work or school.
Hello everyone! I am sooo glad that I have found this blog and Id like to thank you all for sharing your stories. I am 23 years old, and feel that I have the GI tract of an elderly woman. I have been suffering from digestive complications for over 3 years, and have been through countless doctors and exams, with no clear diagnosis. I have been put on several trial and error medications, with no success. I have the constant pain and fullness in my stomach, and after every meal, no matter how small, I suffer from a severe overflow of bile - that has no where to go but up. I am down 30 pounds, in several months, leaving me at a weak 100 pounds. It is a terrible feeling to hear people calling you anorexia and bulimic, simply because I am young and my stomach does not allow my meals to digest. I wish that I did have the choice to be sick, at least then I would have an answer, and a valuable treatment option. However, this is not the case. I have even been told that I am "too young to have any serious condition," clearly I dropped this doctor without another word. I couldn't believe I was being stigmatized for my age. I have been overwhelmed with feelings of doubt and a loss of hope that my symptoms will ever change, and that Ill never have a diagnosis for my symptoms. I often wonder if Ill ever know what it is like to eat in a restaurant, or out with my friends again. To constantly over analyze what I will eat or drink, or wonder what this meal will feel like once Ive eaten it seems like no way to live the rest of my life. Luckily I have a boyfriend who is more than accepting of my condition, and a family, who although does not fully understand, seems to be there if I need them. I just hope that one day I will receive an answer, and will be able to gain back my freedom and my appetite. I found solace in this site and hope that someday I may find relief.
I urge you to continue to seek a doctor who will help you. And to try the remedies the folks here suggest. Especially the Welchol that will help you absorb that bile. Have a Hyda Scan of your gall bladder to see if it's contributing to your problem..... You have to keep searching for an answer to try to manage this disorder. And keep something - even a small piece of bread or a cracker in your stomach at all times.
All the comments above all ring true for me. Bile reflux disease is not easily understood and is never gives you a day off. I have been looking for total relief for years. All this craziness started after I had my gallbladder removed, over 3 years ago. The doctors couldn't say exactly what was causing my attacks and I was given a large amount of tests. It took having an attack on the table during a hida scan (when the cck was injected). So the doctor took a chance and removed it. It was reddish gray and had small pebbles, called gravel, in it. So I for a short time I got some relief from the major attacks but my stomach was still a mess. Well after many more tests, including a mrcp scan and an endoscope, they determined it was bile reflux disease. They prescribed Carafate but it provided little relief. Then, due to a shortage, I was given the generic version Sucralfate (large white tablet) and it worked. Not 100% percent but I actually got some relief from the constant gnawing feeling. I now take it 4 times a day and along with Zofran (for nausea), belladonna (for cramping), prevacid (for heartburn) and Cholestyramine powder (as needed) I am able to move around and function like a human being. I can't say its perfect. No one likes to be taking a ton of medicine but it is what I need to function. I hope that this information is helpful for someone out there. Please don't give up, be that pesty patient that keeps calling. It may be the only way that you will be taken seriously and will find some relief.
Hey quiltinfool, I finally just read your reply. I just went back to the dr and he gave me sucralfate to coat my stomach (as well as the domperidone I was already on) and it seems to at least make meals easier to handle, but the large pill is hard to swallow. I have now started throwing up that's why I went back to the dr. Dr says no sense removing my gallbladder as it is not the problem. No blockage or damage so far. Just my bile refusing to listen to gravity. I asked the doc if I stand on my head will the bile go the right way then,lol, I was just kidding, he laughed. I have not discovered anything that triggers it specifically. I can even have a drink of water and that's all it takes. No one food is worse than the other for me. Actually I lied, thinking about it at this moment while my throat feels lumpy, food that is dry bothers me. It's like the bile dries out your throat and everything goes down rough. When I describe it to others, I just tell them it's like having a big gob of peanut butter stuck in your throat and trying to swallow past it. If food is cold I can feel it when it hits my stomach, but it kinda feels good, after the first initial shock. I have been off work a lot lately, I'd say at least once a week. More if I had my way. I refuse all invitations to dine out, due to the last time being a BIG disaster and the discomfort.
Hi Laurie, I'm happy my posts are helpful to you. But, I need to ask, where do you get the domperidone? Do you live in Canada? I unfortunately live in the good ole US of A where it is banned. Reglan, that causes Tardive Diakanesis - not reversable - is not, however. Go figure. We LOVE our FDA.
Anyway, you need to be careful taking the sucralfate with anything else as it blocks the absorption due to its coating ability. So, take it at least 2 hours before or after any other medication.
And, I'm surprised your doctor hasn't given you WelChol or Questran to absorb the bile that's not passed through with the help of the domperidone. If your symptoms persist, you might ask him if you can try it. Welchol is a pill - larger than the sucralfate, but Questran is a powder that you mix with water or some liquid - that would be easier for you to swallow.
I have been feeling so much better lately since dr took me off sucralfate (I only take it if I wake up in the middle of the night with a stomach ache) because of the absorption issues. Now he wants me to try Questran instead of the Welchol. So I'll try it starting on Monday - but I hear it's hard to tolerate. But, I'll give it a try and I see him again on the 10th. Will post how it goes.
Good Luck
I too suffer from BRD. But Woody is right about the natural approach! But to add to that, our systems do well to be on the alkalin side of the ph scale. If our ph is off, it ruins digestion. Add Add a bad or removed gallbladder makes it much worse. A total cleansing of the digestive system is very helpful. Also add magnesium- potassium aspartate sold at any vitamin outlet will help to raise the electrolytes lost by either vomiting or diarrhea and is a great stress reliever and muscle relaxer! Also, we all have emotions. But did you know that anger or stress releases neuropeptides that eventually damages our livers and cause it to over-react by producing too much bile! Did you also know tha certain organs are damaged by chronic bad emotions? If you went through a divorce, you are 3 times more likely to have GB surgry! If children are involved, it jumps to 7 times more likely, due to the deep resentment! Despair damages the lungs, guilt wreaks havoc with the heart, and fear affects the kidneys! Find time to relax and fill your mind with good positive thoughts each day! Take chlorrella to rid your body of toxic acids. The more acids you remove the less reflux is experienced. Hope this helps!
I have been on Questran for 3 days now - gave up my beloved Welchol - and I cannot believe that for the first time in nearly a year I have no stomach ache. None. It was hard for me to change, but I did. It was a little gritty, so the next time, I mixed it with some strawberry Fruit 2 O and put it in a blender and it whipped up like a smoothie. I'm going to ask the dr next week if I can mix in some fruit.... Will let you know how it goes as the weeks pass. But for now I'm a happy camper.
I've had stomach pain on and off for years. Gall bladder removed 20 years ago and I'm now 65. Dr prescribed Omeprazole but made me feel so ill so didn't take it. Had endoscopy on Tuesday - gastritis, small hiatus hernia and biliary reflux. They jut sent me away with domperidone which I'm frightened to take because I've already got really extensive muscle twitching which frightens me. I've never heard of alot of these drugs mentioned on this site, maybe you can't get them in England. I have just been told to go back to Doctor after l month of domperidone. At first I thought it was a bit like acid reflux but now I've read this site I'm feeling depressed. It seemed to settle for about 12 days then I had the endoscopy (without sedation)- it was a horrendous experience and I had a funny turn after. I got really confused for about ten minutes. They thought I'd had a TIA and spent Thursday morning at the stroke clinic. Was cleared of that but Friday the pain and nausea came back and hit me like a ton of bricks. I am stressed because of the muscle twitching and thinking it's Motor Neurone although the doctor says as I've had it for nearly three years if it was MND I would be very disabled by now and I'm not. Just venting and trying not to moan too much...
Ask your doctor for Questran or its generic cholestyramine. I have been on it for over a week now and my stomach aches are GONE and it takes care of the bile salt diarrhea, too. I've heard that the domperidone can cause your twitching the same as Reglan. I wouldn't take either of them if you paid me to. But, try this - it's a powder and a little gritty - but when mixed with very cold liquid and a blender it's OK. It tastes like orange juice - so I chug it. And if it takes the stomach ache away, I think it means it's taking the bile out of my stomach. Good luck.
Thanks for that - I will ask my GP about Questran. The only problem I can foresee is that I already get really constipated and I wonder if that causes some sort of "bile back-up". I read somewhere o this board about Metamucil absorbing bile and now I can't find it. That sounded interesting as well. Just had porride with water and Greek yogurt and that has helped tmporarily. I was up in he night making a slice of toast! Do you know if white bread or granary is best? Thanks for your input.
Hey quiltinfool. Yes I'm in Canada. I do worry if I will absorb the nutrients and vitamins in food if my stomach is coated.I actually have only been taking the Sucralfate when my stomach hurts. If I take it the three times a day per Doctor instruction my stomach really hurts, spasms.Actually to be truthful my pharmacist says that the domperidone can be played with, find out what works best for me. So I have only been taking both pills at night before bed as I always wake up around 3 to 3:30 with a stomach ache. I try to remember to take the domperidone first before I eat (1 hour) and then the sucralfate when I go to bed. Not really sure if it is helping or not, I get so many stomachaches it's hard to tell if the drugs have at least removed some of them. The sucralfate works best over time, so I guess I will eat these pills until my prescription runs out then talk to doc about something different if need be.
Hi stargazey13
The domperidone removes the bile from your stomach but sure makes me go to the bathroom a lot. Three times a day was far too much, so I take it once a day, when I'm going to have my largest meal. Also if I do not eat within the hour of taking it my stomach will hurt and spasm. Also neither drug I'm on is suppose to be within an hour of dairy products. Pretty tough for me as I live on milk, it's the only thing that doesn't trigger any naseau. Suppose to drink skim milk as fat in foods makes bile work harder, but I don't, can't help it, I just love it too much. Domperidone will definetly get rid of the constipation. Maybe a little too much. Another thing I've done is not take domperidone if I feel good. Why make my stomach work if it is at ease for a change.Domperidone can be taken after meals (1 hour) as well so if I eat something that ends up bothering me then I take the domperidone.
Hi Laurie, I really can't stress enough to be careful taking the sucralfate and other meds as the sucralfate coats the stomach and then blocks the absorption of the other meds. Ask the pharmacist. The Questran only began to work for me after the doc in Cleveland told me to stop the sucralfate. Now I take only the Questran powder 3 times a day and my Protonix for acid reflux and I feel relatively normal. Stomach aches gone.
I'm in a bad way. I've had a bad flare-up last week and took a Domperdone and ended up sitting up all night with stomach pain. Then a naturaopath gave me some slippery elm capsules and said they would heal the gastritits and then we could address the bile reflux when the gastritis wwas improved. Well... I took the capsule all day yesterday and felt terrible - still do. They've got Goldenseal in them - it smells vile and tastes worse. I can still taste it. When I reseaarched Goldenseal it says it increases bile production. Surely I shouldn't have been given these. I'm going to get some slippery elm on its own and I ordered some coconut water. Doctors don't like prescribing Sucralfate in the UK. I seem to be so sensitive to any prescribed medication I'm clutching at straws here. I feel so lousy and fed up.
I have bile reflux and I am taking nexium,sulcrate and modulon for spasms.The natural supplements I take are licorice and marshmallow root,aloe vera,spirilina and ginger tea with honey,I tried apple cider vinegar and it helped for a while then it made me sick.
I am going to get the bravo capsule next week it diagnoses bile reflux as well as acid reflux,then the surgery would be different then the nissen fundoplication they would have to re root the bile if it is bile reflux.
Good luck to everyone this pain is so bad and it makes life a night mare.....but there is some help.
I have bile reflux and I am taking nexium,sulcrate and modulon for spasms.The natural supplements I take are licorice and marshmallow root,aloe vera,spirilina and ginger tea with honey,I tried apple cider vinegar and it helped for a while then it made me sick.
I am going to get the bravo capsule next week it diagnoses bile reflux as well as acid reflux,then the surgery would be different then the nissen fundoplication they would have to re root the bile if it is bile reflux.
Good luck to everyone this pain is so bad and it makes life a night mare.....but there is some help.
i was diagnosed with gastritis, for 12 mths until my gallbladdr erupted due to a stone, had the gallbldder removed and had an endoscopy 6mths later they say i have a moderate amount of bile in my stomach, id like to know how to reduce this i am on a life time low fat diet, take omeprazole, and i find colfac is rly good for the pain which my gp prescribed.
Hi, chloe,
Please try Questran powder- cholestrymime (generic). Please. Don't take anything else with it, except the omeprazole. You will be amazed.
Hi all, I'm from New Zealand. Just been diagnosed with bile reflux. My history: was in various degrees of pain for a few years... initially had a gastroscopy and was told I had small hiatal hernia... then experienced occasional severe pain in the middle of the night for 5 years (Emergency Dept told me it was just gastritis)... a year ago surgeon says hernia large now and pain due to that... had nissen fundoplication surgery... a month later back in hospital with same pain... then told pain was actually gallstone attacks (was told by my GP 2 years prior to this that I had a 'muscular pain' when it was actually gallstones)... following month gallbladder taken out... 6 months had no symptoms... then for the last year I have had gurgling in my throat, a phlemy lump constantly in back of my throat, hoarse and sore throat (can't talk for too long as it gets worse), occasional nausea and find it harder to breathe. Lots of tests over last year have come back normal, but recent gastroscopy says bile in my stomach. Surgeon says bile reflux is either due to bottom valve of stomach not working well or motility of stomach not emptying fast enough. He put me on motilium for a couple of weeks (to increase stomach emptying), but that did nothing for the symptoms and gave me pain in my side. Just started Questran powder (Cholestrymine) a couple of days ago as that is supposed to bind with the bile acids and get them out of your system faster. It's actually a medication used for people with high cholesterol. Will let you know how this works. Seeing a gastro specialist soon... which I should have doen in the first place, rather than rely on a surgeon, as their only answer is to cut you open!
So happy you're on the cholestramine - stick with it and you will be happily surprised. I hope for your sake.
Not sure how soon the Questran is supposed to work but I still have the throat symptoms and now feel bloated all of the time. Check out the other bile reflux page on this site... it gives a really good outline of the disorder. A few people on it have also had good results with Trikatu and Triphala herbal tablets. Might give these a go if I have no joy with the Questran.
People have mentioned taking Welchol... is this the same as Questran?
Welchol is a pill and so takes longer to work. Questran is a powder and so is working as soon as it hits your stomach. And it's better at binding with the bile than Welchol. I was a firm believer in Welchol until the GI doc at Cleveland Clinic convinced me to switch. I am so happy I did. And, DON'T TAKE ANYTHING ELSE WITH IT. Except as directed by your doc. Like and acid blocker if you have acid reflux, too. As I do. I take one Protonix a day and the cholestrymine (Questran) 3 time a day. I have had not one symptom for 3 weeks now.
I hope that your suffering ends...i really pray for you !!
Thanks. The Questran is actually starting to work better now... hopefully the side-effects will die down once my body gets used to it. One bonus is that my bowels are now regular (I've had diarrohea ever since my gallbladder was taken out)... hooray! I'll still keep my appointment with the gastroenterologist, as I want to know about my long term prognosis and he may also have some updated medication info and helpful suggestions. Will let everyone know if I get some good advice.
I'm so happy you are having luck with the Questran (cholestrymine). I mix it with a flavored water that we have in the US - Fruit20. Makes it go down easier. And I chug it.... And, yes it gets rid of the bile salt diarrhea. I find I can eat just about everything except coffee, chocolate, raw onions and garlic.
My GI doc says I will have this problem for the rest of my life as he believes the pyloric valve (between my stomach and intestine) is non-functional and causes the bile to back up into my stomach. Thus, I sleep on my back with a wedge pillow so that I won't lie flat and have the problem with the reflux.
One extra with the Questran is that it helps to lower your cholesterol. A two-fer....
My GP said it's not serious and don't qorry -just take my Motilium and Gaviscon so what can I do. Waiting for some triphala to arrive although it apparently increases bile production. I'm stuck. Doc won't prescribe anything else. Help,
@ quiltinfool... The Questran just keeps getting better every day! I don't mind it at all. I mix it with pear juice and the taste is fine. I'm the same as you, can't have chocolate, coffee or onions... Dr says to stay away from alcohol too, but I don't drink much anyway.
I want to ask the specialist whether my symptoms will get worse in the long run... a lot of other people on here seem to suffer way worse then me. Mine are all just in my throat and I don't have any pain in my stomach. I guess if it gets worse I can have my nissen fundoplication tightened, but that will be a last resort.
Thanks for your comments.
@ stargazey13... If you have definitely been diagnosed with bile reflux (and not just stomach acid reflux) then you should get your Dr to prescribe Questran (read about it in the previous posts and Google it). It's great stuff! You should also be referred to a gastroenterologist... specialists know way more than GPs (I should know, I work with them!).
I have also ordered Trikatu and Triphala herbal tablets, but I'll ask my specialist about them before I take them. I don't think the Triphala increases bile production (you certainly don't want more bile being produced and going into your stomach!)... I've read it helps cleanse the bowels faster (they say it has a mild laxative effect). The Trikatu is a natural form of the Motilium, in that it increases stomach emptying. You should Google both of these and read up on them.
Good luck with the GP!
Hi Kiwi - I'm in the UK and it was a gastro consultant that diagnosed me and prescibred Motilium and told me to go aaway/ I've got such a pain in my stomach today I can't face the Triphala or Motilium. It definitely says Triphala increases bile production yet it's supposed to help bile reflux so I don't know what to think. I'm beginning to wonder if I've got pancreatitis because I'm in so much pain.
If I go to my GP again he'll think "Hypochondriac" - even a couple of my best friends think that because they don't understand.
Hi stargazey13, I reckon stay away from the Triphala if you have read that increases bile (I won't be taking it now that you have said that)... it did say online that it is a mild laxative and as excess bile acid makes you 'go' more often, maybe that explains why it has this effect! I still might give the Trikatu a go, as it's supposed to increase stomach emptying (since I stopped taking the Motilium due to abdo pain). My surgeon reckoned the Motilium (to increase stomach emptying) and Questran (to absorb the bile acid and get rid of it faster) together would help.
People on this page and the other bile reflux page seem to have major stomach pain with eating, which I don't have yet (just the throat symptoms for me... lump feeling, phlegm, gurgling, hoarse and sore). So maybe your pain is actually due to the bile acid reflux?
The Questran has definitely helped me (not symptom free but way better than before). It's mainly prescribed for people with high cholesterol, but is also used for other disorders and people like us, as it binds to the bile acids. It's good because it's not absorbed into your system. I just had minor side effects with it initially (bloating, flatulance, increased urination), but they have died down. It won't hurt to try this out... ask your specialist or GP for a prescription. It comes in powder form and I just mix a sachet with pear juice (can use any juice or water) just before I eat in the morning. Think I really need another sachet before lunch, but will wait until my gastro specialist appointment to confirm that (some people take up to 3 sachets a day).
I know what you mean about the hypochondriac thing. They tested me for a year and it all came back normal, until I had yet another gastroscopy a month ago and they found the bile in my stomach. It's good you actually have a diagnosis.
I'll let you know if my specialist comes up with anything different... seeing him on the 15th May. Definitey try the Questran though. Good luck!
Hi Kiwi - I've bought my Triphala now but dare ot use it. Let me know how you get on with your Trikatu. You say you had ab pain with Motilium? I took one this morning and I've got palpitations and my chest feels tight. Doesn't say that in side effects. Does the Questran make you constipated? We are all different, in the meantime I maybe I'll take myself off to the vet - he seems to cure the cat of all its ailments!
Best Wishes
Hi stargazey13 - Lol, don't go to the vet, they are even worse than the GP! I can say this after I spent $10,000 on my dog after she had a throat obstruction 4 years ago (multiple surgeries).
Stop taking the Motilium and check with your GP or specialist about this side effect (or even the pharmacist, who knows way more than the Dr does). I just had a look and palpitations are an uncommon side effect of Motilium, along with other more rare and serious cardiac side effects... check out this link (pages 5 & 6 list adverse effects): http://www.janssen.com.au/files/Products/Motilium_
I haven't received the Trikatu yet, but will let you know what my specialist says about it. Think I best check with him before I start taking anything. Even though they are herbal they can still interact with prescribed medications. It also pays to be aware of exactly when you take your medications. For example, when taking Questran you are allowed to take other medications one hour before or 4-6 hours after.
Yes, Questran can cause constipation (it has helped me though as I've had diarrohea for the last year since my gallbladder was removed... now my bowels are more normal). Now that I think about it, the people on this site taking Questran also took the Triphala... so the Triphala would actually counteract the constipation the Questran might cause. You may not get this side effect, but it seems to be a more common one.
Let me know what they say about the Motilium side effects.
Hi stargazey13.
You need to get serious and take control of your own health. You are not a hypocondriac. I had one like that - when I asked for a referral to the Cleveland Clinic he said, why bother, if I don't know what's wrong, they won't either. The height hubris!!!! You are hurting and suffering and need help.
If your current doctor won't help you, you need another doctor. You need a gastroenterologist. Period. It took me 4 doctors before I found one who would actually try to help me. He was at the Cleveland Clinic here in Ohio and, as far as I'm concerned, is an angel. You need to try the Questran. Not Reglan or Motilium - they are not benign as Questran is - they have side effects. Just get and take the Questran (cholestrymine) 3 or 4 times a day until you rid your system of the bile. Insist on it. Good luck.
Hi - thanks for your advice. I am taking my health seriouslybut the trouble is that here in the UK we cannot choose which doctors we go to, I saw a gastroenterologist who arranged an abdo CT (normal) and an endoscopy. It was the consultant who said to take Motilium and Gaviscon and he didn't want to see me again. My GP just wrote the prescription. I've also got a small hiatus hernia (disovered at endoscopy) which was playing up yesterday (not burning just squeezing). I will talk to my GP about Questran but if he says no it' where to go from there? Before I had the endoscopy my GP prescribed Omeprazole (PPI) and they gave me palpitations which the consultant agreed could happen. I think my HH is hurting more than the bile today but I an't be sure because I'm wracked with pain anyway.
The thing that worries me about Questran is the constipation - I suffer from it anyway because I've got an extra long bowel (discovered years ago)and that will make the HH worse. I'll make a GP appointment,
Hi stargazey.
What is a consultant? Is this a doctor? Heaven help us if it's an insurance agent making medical decisions for you....
Try everything you can to get the Questran and if it makes you constipated - that can be addressed easily. Your main goal now is to get that bile bound and out of your stomach. And the more worried you are, the more acid you will produce and that will get you more pain - with both acid and bile.
Good luck.
Hi Quilt..
I live in UK and am dependent on ur NHS which has its good and bad points. We are dependent on insurance agents in a way, We pay National Insurance all our working lives and that entitles us to "free" health care. The trouble is you can't really choose your GP or your specialist, you have to wait weeks for appointments and because funding is always squeezed no tests will be done that might be deemed unneccessary so you are at the mercy of your consultant. He did a CT scan quite quickly to rule out cancer then sort of lost interest... as his letter said "the endoscopy showed nothing serious "small hiatus hernis; gastritis, biliary reflux (++)". I assume the to plus signs in brackets mean lots of bile - how would I know. Your 'GI specialists' are our 'gastroenterology consultants' and we can't choose them either. The only way we can see someone privately is to pay a lot of money and we still must have our GP referral. I live in a very rural area and the choce is limited anyway. Itink our saying is "between a rock and a hard place". I will tal to my GP next week (he's on holiday now - he's always on holiday). I've got quite a good rapport with him usually. Thanks for your interest. Hope you are okay as well.
I have had stomach problems since 2005. They began after I had Sudden Hearing Loss (lost 90% of my hearing in 2 weeks). Large doses of steroids and antiviral drugs brought it back. I am also bipolar2. I have the mood swings but they are not noticeable to other people. At the time I was also taking Lithium. By the time my hearing returned, for the first time in my life, I had started having stomach problems. At first it was nausea. A gastroenterologist prescribed a PPI. I took it and told him it didn't help. His response: "Just keep taking it." Over the years, I have taken every PPI. None helped. Doctors were always resistant to this news. The nausea became worse and worse.
During this period I also experience enormous stress. First my mother died. I was very close to her. When I returned home after her death, my husband was ill with what became his final disease. He lived through 1.5 extremely stressful years characterized by constant emergencies. I loved him very much and did everything I possibly could to help him. Meanwhile, my stomach kept getting worse. After his death, I sold my home (at the depth of the Recession) and moved to be close to my children.
For 2 months after moving, I could suddenly eat everything! Then, what I now know is bile reflux occurred. At the same time, I developed a herniated disk. I had moved near my children so I could get help from my children in case of illness. Ha! They accused me of being a hypochondriac and refused to help. Through a wonderful Orthopedist and terrific physical therapy, I was able to deal with my herniated disk. Meanwhile I started the rounds of gastroenterologists. The first one said I was too complicated and referred me to the "great man" in this area. I waited 4 months to see him.
Prior to seeing him, his techs gave me a pH monitoring test. My esophagus was extremely irritated. They kept trying to force the tube down my throat. I kept coughing uncontrollably. Finally someone thought of giving my Lidocaine. When I returned to have the tube removed, the tech ripped it out of my throat and left my lying in a room alone. I went into shock. I couldn't breathe! I called for help. No one responded. Fortunately, I sing in a chorus. One breathes with the diaphragm when singing. I tried breathing that way and was able to breathe. Had I not known how to breathe that way, I am sure I would have died. When they finally checked on me, they got hysterical. They actually told me to stop breathing with my diaphragm. I ignored them. I knew I was under control. About 2 hours later I was breathing normally enough to be discharged. They did not report this incident to the doctor.
When I finally saw "the great man", he had all of my records. I always report the bi-polar condition because of the medications I take. He took one look at this and said. "it's all in your head". When I pointed out what had happened with his techs, he was surprised. Then he said, "it wasn't their fault."!
2 weeks later my esophagus was so irritated I couldn't swallow solid food and I didn't have a doctor. My daughter, a Nurse Practitioner, who finally realized something was wrong with me, knew a good Gastroenterology group. I took the one who had an appointment. She, at least, realized that it was not "all in my head" and did an Endoscopy. She discovered bile in my stomach. She, however, did not know what to do about it. She also put my on Carafate, which helped a lot. Unfortunately, after a year, I developed side effects which forced me to discontinue. I then tried Domperidone. It made me sick.
After the Endoscopy, my Gastorenterologist also suggested seeing a specialist in Wisconsin - half way across the country from me. It took 4 months to get his office to even make an appointment and another month to see him. He was sympathetic and seemed to understand what I was going through. Two weeks later, he asked my Gastoenterologist to order 2 tests. She had never seen one of them, a 24 hour Impedance and pH Monitoring study. She told me to go back to the "great man" whose techs had almost killed me. I refused to go there. Apparently no one else in the area where I live knows how to do one. I knew from experience that the techs where I previously lived were excellent and told my Gastroenterologist that I wanted to travel there for the test. It took 2.5 months for her to figure out how to order it. Even so, she only ordered 1 of the 2 tests the Wisconsin doctor wanted. I suppose I will never get the other one.
I traveled there. By this time, I was feeling weak and tired all of the time. I did everything I could to make the trip easy - used a wheel chair in the airport, took cabs, stayed in a hotel within walking distance of the place where I got the test.
The test results came back this week. Guess what? I have bile in my stomach. I spoke to the doctor's girl Friday today. She said that my doctor wants me to now use the doctor I had where I previously lived! Meanwhile I feel sick, weak, have lost so much weight that I am a dried up skeleton. Everyone accuses me of not eating enough. I know that is not true. But they won't listen.
So here I am. My mouth and esophagus feel like an open sore. My stomach hurts. I probably don't have a doctor. I feel weak and tired - too tired to do things I like to do such as sing in my chorus. My sleep is interrupted by the constant reflux. My kids are yelling at me for not eating enough. I just missed singing in a concert this weekend. At least I have drugs to deal with depression! And now, due to discovering this website, I have a little hope .
Hi grandma71, wow, you poor thing! It's a tragedy that Drs seem to put these symptoms down to anxiety and not an actual physical illness (seems to be a common comment from people in the USA). I feel for you as I have previously worked as a nurse in mental health, so can imagine the frustration of having this disease falsely blamed on your bipolar disorder.
Have a read of my previous posts and try and get Questran prescribed. Has been working for me.
I've also just joined a Bile Reflux Support Group website: http://bilerefluxdisease-projecthope.webs.com/
Good luck!
Thank you so much for this advice. i always though i was alond in this suffering in pain.i didnet even realize how many people suffer from this condition. i just got out of the er after being there for about 7 hrs, all I leave with is a pill for Nashua. I know alot of times its cause by the foods we eat.
any advice on what to eat, and drink.
thanks again
Hi Liz, this is a good website (gives advice on diet, etc):
http://www.livestrong.com/bile-reflux/
Look around the bile reflux support group website for some tips too.
I'm off to a GI specialist tomorrow for the first time, so will report back on anything useful. Have you seen a specialist?
hey kiwi i haven't seen a specialist, for years the dr.s would always say it was allergys or a bug i caught. but could never really point it out till most resent. Any advice on what kind of specialist to look for, maybe they can help with medications
good luck at your app.
Hi Liz, you need to be referred to a Gastroenterologist. Not sure how it works in your country, but in New Zealand your GP refers you to a specialist. I have health insurance, so that covers the costs for me.
My appt went well. He told me bile reflux is common. He told me to stay away from the internet (he is worried I'll pick up the wrong information) and any herbal meds (as they haven't been researched). He said if I just stick to the prescribed meds and get the dosages right then that will help. So I'm back on the Motilium (which increases stomach emptying) and the Questran (which binds to the bile to get rid of it faster).
Good luck!
Hi Kiwi
I think your specialist might be right about staying away from herbal remedies. I tried Goldenseal and now Triphala, both with the same results. When it's settled a bit I'll try the Motilium again and if I get palpitations again then I'll just do nothing and curl up in the corner and shut the world out!
Hi stargazey,
Were you able to get the Questran?
Hi Stargazey, maybe you could talk to a pharmacist about the Motilium side effects and gauge the seriousness of your palpitations from them? Some side effects do settle down after you have been on the meds for a period of time. My specialist said that getting the right dose is important. I don't know what the prescribed dose of Motilium was for you when you first went on it, but maybe you could start out lower? My surgeon first prescribed me 4 day, but I decided to only take 3 a day (half an hour before each meal). Because of the pain in my sides the specialist said to only try 2 a day, so I'm taking one before breakfast and dinner. I think it is trial and error. At the end of the day the benefits should out weigh the side effects, so if you do end up getting too many side effects then I guess you need to try something else.
I know you have issues with the constipation, so I can understand why you are reluctant to take the Questran. But again you need to remember that you may not get this particular side effect. The Questran comes in sachets and the specialist told me to take half a sachet twice a day... so you can take it gradually on this med. It's a shame you can't get the constipation under control... what have you taken to try and manage this?
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Jen's Solitude Level 3 Commenter 2 years ago
Hi dragonlady1967,
I am at a loss for words after reading what your daily struggles are like. Since your digestive juices are attacking your stomach, is BRD considered an autoimmune disease? I can only try to imagine the pain you face when you eat, but I know I can't come close to how it is for you. I hope you do start that support group, or find one in the near future, as it must be horrible not to be able to talk to someone who knows exactly how you feel. All I can do is admire your courage and thank you for letting me know what this is and how it affects your life.
~Jen