When Your Stomach Hates You - Living With Bile Reflux Disease
91Many 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.
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Comments
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.
Jen's Solitude says:
4 months 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