I have bile reflux disease. Living with this condition feels like a painful nightmare.
Bile Reflux Disease Is Real
Many people are familiar with GERD or acid reflux disease. However, when I mention that I have bile reflux disease, eyebrows raise in prelude to a barrage of questions. For me, living with this condition is a nightmare plagued by pain, days missed from work, loved ones looking at me with hopeless concern, and, my favorite (and I mean this with complete sarcasm), a seemingly endless succession of doctor visits in which I sometimes wonder if the doctor even believes me.
I can tell you that bile reflux disease is real—and in many ways, life-altering. When my gastric doctor first told me I had it, I wasn't sure what it was. You see, he didn't really explain. I had to go on my computer, look it up, and learn for myself.
What Is Bile Reflux Disease?
According to the Mayo Clinic, this condition is caused when bile from your small intestine back-flows into your stomach. For me, this causes my stomach to go into violent spasms. Think of it like the feeling the neighborhood boys had as kids when they would have fun punching each other in the stomach. While we're eating, we tend not to pay attention to every time we swallow. As soon as we do, 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 I doubled over with every bite I took. Hence, an emergency room visit shortly followed.
The Cause of My Condition
This condition happened to me because I had my gallbladder removed years ago. Now I no longer have the organ to store digestive fluids from my liver. This does not happen to everyone who has had his or her gallbladder removed. There are many people I know who live perfectly happy lives without this tiny robin's-egg-blue organ. However, I do not happen 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 gallbladders.
The symptoms of bile reflux disease are very simple and short. However, each one packs a powerful punch to your body.
- Unintended Weight Loss: This is the most devastating one, in my opinion. I am not a very big person to begin with. For a person my size 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.
- Nausea: Everyone feels sick to their stomach at some point. However, with bile reflux disease, you are sick to your stomach all the time.
- 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.
- Occasional Coughing or Hoarseness
- Frequent Heartburn: You feel it all over your stomach. It is a gnawing, burning sensation that does not go away. It is accompanied by the inflammation of your stomach.
My Diagnosis and Treatment
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 occasionally have lots of blood work done 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 or 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.
Getting Support Is Important
Most of the time, you don't really have anyone to talk to about this. The number of people with bile reflux is 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. I am lucky enough to have a great partner who tries to understand what I am going through, but it isn't the same as speaking to someone else suffering the same things. I would love to start a support group, 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. Lifestyle 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.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Robin on September 13, 2018:
I went to numerous Doctors and Specialists and no help. Sucralfate is fabulous. I went to an acupuncturist who put me in a strict diet with Chinese herbs and needles two times a week and after 5 weeks I am feeling better. The attacks are getting farther apart and my stomach is calming down.
karen on September 02, 2018:
Read More From Patientslounge
Thankyou for putting me in the picture about this condition,i am going back to hospital to get my mri results but how the consultant was telling me that he thinks I have this condition.Reading about it has helped me with things they don't tell you,so thankyou this has helped me I have been off work now for 4weeks I do worry how I am going to cope with going back they don't understand.
Yuhel Lopez on July 26, 2018:
I have been suffering this acid reflux of mine since I was 24, I've been taking lots of medicine prescribed by my doctor but still I'm not cured. I'm beggining to lose hope until, One day I'm browsing thru the Internet and reading articles related on my condition and I saw this www.bonzaseeds.com/blog/animal-cookies/ according to this article it can cure my acid reflux and I want to try it.. Does anyone already tried this kind of method? Can someone give me a good advice??
Kiwi1967 from New Zealand on March 05, 2018:
Hi Chuck, this page isn't used much... I suggest you join the Bile Reflux Support Group on Facebook. Up to 30% of people who have their gallbladder removed will develop bile reflux and/or bile salt diarrhea. So if your issues started after removal, it's a bit obvious bile is involved. It's not normal to have bile in the stomach... I got my diagnosis when they found some bile in my stomach with the second endoscopy... it's not always there, so hard to diagnose this way. It is possible to have both acid reflux and bile reflux together, but they are two different disorders with different treatments. PPIs can make bile reflux worse for some people. The best way to know for sure is to have a multichannel impedence test, combined with PH monitoring to measure any acid and non-acid reflux over a 24 hour period. Not everyone is the same with their symptoms and having a gnawing/burning feeling in your stomach can indicate bile. If your gastro specialist won't do any more testing, it wouldn't hurt to ask for a second opinion.
Chuck Kelly on March 04, 2018:
Curious to get some feedback on whether or not if you guys think I have bile reflux.
Had my gallbladder taken out. Was doing fine, stopped my PPI, didn't know I had a hiatal hernia or gastritis. Got acid rebound, which I didn't know about either. Caused me a ton of stress because my research lead to bile reflux. Had an EGD done a month later which showed no bile but erosive gastritis with bleeding. A month after that my doctor asked me stop my PPI to get retested for h-pylori. Got rebound again and tons of burning in my stomach. I guess it was the acid touching the erosion's in my stomach lining.
Doc gives me dexilant, had two good weeks, but then the burning came back and didn't stop. After almost 5 months I had a follow up EGD. Bleeding and inflammation was gone, but I still had erosive gastritis. Doc says that it can take a while to heal. I asked about bile, he said there a small amount, but it's common for bile to work its way into the stomach every once in a while especially when fasting. He says I don't have bile reflux. He has patients that do, so I tend to believe him. Biopsy's came back with chronic gastritis.
PH level of my stomach was a 1. He said I should have been more alkaline with the dexilant. I started taking tums when needed and some tagamet and the burning improved a ton. I still get it, but no where near as bad. I decided to switch meds from dexilant to omeprazole. I know I have a long road to recovery, but I guess it's still in the back of my mind that this could be bile.
A few other things I would like to mention. For the most part, I sleep completely fine, almost no symptoms. Never get nausea. And to reiterate, gastritis improved which I would think wouldn't happen if bile was the cause, PPI's seem to be helping, no regurgitation, nausea, bloating, or diarrhea. And the PH level of my stomach was a 1, 1-3 is considered normal and from what I've read, anything over 8 could indicate bile reflux.
So, if your opinion, this burning in my stomach, do you think it's just regular old acid or is it bile? Thanks!
jd on December 21, 2017:
Hi my husband had is gallbladder remove in 2012 and he is have a lot of itching. Over his body is like raise bump. He have to take Allergy pill every day is a y body having these symptom?
Mia on September 03, 2017:
I am suffering terrible. Let's start a support group.
Crystal Hendley on September 01, 2017:
I have this and suffer immensely. Would like to talk to someone who might understand.
swan2017 on August 19, 2017:
This all started Jan 2017 and has been a painful journey. Finally, August 2017 after the 7th doctor diagnosed with bile reflux. Prescribed yet another drug Cholestyramine packet that is a powder 2 grams per day. It felt like a miracle after using it for the first week and then the second week the burning sensation started to return. Why is it this started working then stopped working not as good? The doctor also has me on 50 grams of Zoloft and 10 mg of Triptyline at bedtime for IBS for severe constipation. I take 17 grams of Miralax a day and then do a "colon prep clean out" this is used for colonoscopy procedure every 3 weeks. My gallbladder was removed in 2009 and now this has changed my life it seems like forever. Does it get better? I have now lost 70 pounds and I lost the first 40 pounds in two months. I am always wondering before I eat anything how is this going to affect me. I barely eat and when I do I pay for it the next day.
Nikki on August 01, 2017:
i too have the same disease and well at the moment i feel like i could go mad..i had my gallbladder removed 18 mths ago and well things have gotten really bad...doctors do sometimes think its all in my head ..i have to take 6 tablets at night to help and i have chronic bouts of vomiting bile heartburn continually 24/7 sickly feel ..i am so over missing out on life .i have again booked in for another endoscope to see how things are now but last time they said i also had gastritis and spinchter of oddi but surgeon refused to operate in public system im at my wits end ..i dont know bout anyone else but ive tried everything eating little eating nothing im only eating maybe cereal n toast living on cups of tea through my work day but still it comtinues
i will join fb page
hoping to get some sleep tonight
wishing u all well
Ronda on July 26, 2017:
I have this a as well. Gallbladder removed in 2003 and a bad auto accident in 2005 which damaged the valve in the bottom of my stomach. I haven't had a carbonated drink since 2010 because it burns so badly.
Axw on July 10, 2017:
Was finally diagnosed with bile reflux after a few years of intense pain after my gallbladder removal. It really is one of the worst pains there is, I completely empathize with you. Luckily my GI dr prescribed Sucralfate which has helped me a TON. I took it 4-5 times a day to begin with for about a year, then started taking 3-4/day for a few months, then 2/day, then 1, and now I just take it when I feel the pain coming on. (Sometimes 2 if it's bad.) I can't describe the difference this medicine has made for me. It's been life changing. I had taken countless other antacids without any relief at all, but this worked. I believe it's used for ulcers. Definitely worth a try. (Ocassionally I'll have an attack that can't be stopped my medicine, maybe once a year, but for the most part it works for me. Definitely better than the 3x/week I was at before!)
WhisperSunny on July 02, 2017:
I want to please tell you I have Bile Reflux really bad have had since loosing my Gallbladder in 2012. If you use Probiotics it makes Lactic Acid and can cause acidosis. Please do not take if your having Bile Reflux. Look on FodMap it explains it well. I am suffering horribly. If I do not quit my Reflux soon I believe I will not be here. Have taken PPI's they help for awhile then nothing works at all, have gastritis and Hiatal Hernia my Docs will not listen. I feel defeated. Even sitting up I get this Acid it is burning me alive. I found the group please sign me in. Thanks.
Kim on June 29, 2017:
I have the same thing. I have been on short term disability/ fmla for two months now. Any food or liquids that go down severely hurts. I go back to my Gi doctor in July.
Julie on June 29, 2017:
Kiwi1967, I indeed had my gallbladder removed which is what triggered my bile reflux, it actually started two days after it was removed. I never had gallstones my gallbladder just quit working. I also have a condition called Ehlers-Danlos syndrome which is what more than likely caused my pyloric sphincter to stop functioning properly. I did not have Nissen Fundoplication, GERD was not my problem at the time, just the pyloric reflux. The reason I didn't put the name of my surgery on here is because unless things have changed since I last saw my surgeon there is no actual name for what I had done. My surgeon & I literally sat down in her office with a pen & paper & drew out different procedures & decided what aspects of each would be beneficial in fixing the problem without being too risky. It ended up being a modified combination of several procedures- duodenal switch, biliopancreatic diversion, roux en y & pyloric diversion. Which like sometimes happens with surgery also had to be revised a bit more during the actual procedure (my entire pyloric area had to be removed due to severe damage from the years of bile erosion). The other reason I did not put all of the details in my original comment is because, like I mentioned, I had very rare complications (probably stemming from several causes including the EDS) that caused a mess most people including doctors don't even believe when I tell them let alone believe I lived thru. After the original surgery, thanks to the complications I had, I had to have an emergency surgery that ended up with even more modifications to the original surgery plan. Because of that, its not easy to explain & for me its something very emotional to discuss (it almost cost me my life & was a month long stay in the hospital). I just didn't want to put my entire long, crazy & hard to believe story out there because others may think I'm making things up or that I'm just plain crazy or worse, to make anyone else too scared to seek a fix to this condition.
Julie on June 27, 2017:
I had severe bile reflux for over 12 yrs. It caused excruciating pain several times a wk, it caused ulcers multiple times. I had to have EGDs at least once or twice a year, I had to take NINE different meds several times each day just to keep the symptoms at bay! It got to the point where even on so those meds I was having severe "flare ups" at least once a day- when I say severe I'm talking, extreme pain (I've had kidney stones 3 separate times & given birth naturally twice & would rather go thru all that at once than the pain I experienced with the flare ups), they would come on suddenly, often for no reason at all. It would always start with a terrible gnawing pain in my right side, if I was unable to take my meds right away (& even when I was able to take them at times), the pain would very quickly get much worse......to the point where I was sweating profusely & often sat outside in the snow or would have to quickly get into the tub & run ice cold water, use a washcloth to keep the cold against my side just to stop the spasms if was causing in my diaphragm so I could breathe! Several times I came very close to passing put from these flare ups. Frequently I would vomit large amounts of bile, which just made the pain & spasms worse. I had to strip naked in the bathroom at a doctors office once even! It was painful, embarrassing & just exhausting every time the flare up would pass I would shiver, feel very weak & not even have the energy to move. After 12 yrs of this progressively getting worse & seeing doctor after doctor that didnt have any solutions other than adding more meds & to "hope for the best", after being told by multiple specialists & surgeons that there was nothing that could be done, I had absolutely had it! I'm fortunate that I am a nurse, I continued to research procedures & trials & surgeries & physicians until I found one willing to help! She was amazing! Together we discussed what the problem was caused by & what would work to "fix" it. On Nov 19, 2012 I had a "groundbreaking" surgery that has forever changed my life, for the GOOD!! It wasn't easy by any means (I had rare complications) but even considering the complications, I would do it again, its made that much difference in my life! Specialist after specialist & surgeon after surgeon had told me there was no cure, that it was too dangerous, that I would never find anyone willing to try. Well, I couldn't live the way I was anymore so I kept pushing until I found someone willing to help! She did so much more than help! I used to have those life paralyzing flare ups multiple times a wk, now I have MAYBE two a year!! For those of you who are experiencing what I went thru, there is hope, thanks to my perseverance & an amazing surgeon, I'm living proof!! If anyone would like to know more specific details please feel free to ask (firstname.lastname@example.org)! I know what you're going thru & I KNOW there's help! I would love to be able to help anyone who is in the shoes I used to be in! Seriously, feel free to email me with any questions I may be able to help with hopefully my experiences can help someone else as well!
Claire Davies on June 20, 2017:
Hi everyone I have been having all these symptoms for over 18 months and only recently being last Friday (16/6/17) being diagnosed with gastroperisis and bam (bile acid malabsorption) and I finally feel relived that everything I have gone through even losing my job to these horrible things. I honestly thought that I was only one of few do we know if there are support groups for this what we have gone through.
And to the original poster I understand everything you have gone through and go through on a daily basis.
Fabian on June 01, 2017:
For everyone who's suffering from bile gastritis and who still has their gallbladder like me (...might be helpful for those without it as well):
Please make sure to get checked for small intestine bacterial overgrowth (SIBO)! Particularly if you also have to burp a lot and feel bloated there's a good chance you might have this. It can be diagnosed by a simple non-invasive breath test.
I've suffered from bile gastritis for months - burning stomach, bitter taste in my mouth, sometimes heartburn. Later, in addition to this I also had biliary colics. So I thought it had to do with my gallbladder. But imaging came back fine. Assuming it is microlithiasis (tiny gallstones you can't see on imaging), I asked my doc for Ursodiol. After a week I noticed that I wasn't bloated at all - it hadn't even ocurred to me how much I had been for so long. Also the need to burp all the time went away. Talking to my doctor again, we discovered there really wasn't an issue with my gallbladder but that I had bad bacteria in my gut. The Ursodiol has some antibiotic properties, so that's why I felt better. Now I'm getting proper treatment and am getting better every day. No more burning bile in my stomach!
Remember that Ursodiol isn't supposed to treat SIBO, you might need strong antibiotics, so get tested first!
kamran on May 24, 2017:
we found last year that my mom have bile reflux, she is 66.After a struggle of 4 months in different hospitals treating for vomiting and no appetite she lost almost lost 20 lbs, but one day she was feeling ok and she start eating every thing was fine but right after one year it strikes again. she stop eating and start vomiting again losing her wait
i would be really appreciate if some can help me or advice me in reflection of experience
Sydney girl on May 23, 2017:
I haven't had a gall bladder for 28 years but only recently started suffering from gastritis. They found H pylori, got rid of it and my symptoms continued despite the PPI Omeprazole and Pantoprazole. Recently I started waking up nauseous with stomach pain which continued throughout the day. I assumed it was the PPI but after a brief hiatus from symptoms after I stopped the PPI, the symptoms came back. I self diagnosed bile reflux given that stomach pain/nausea/diarrhea continued whether I was on PPI or not and also because I chucked up a cup of bile after fasting for 17 hours when I had a norovirus. I followed the recommendations of someone who suffered from bile and gastric reflux - just put in 'bile reflux' and 'the whimsicalist' and you should get her web page. She was advised that mild food allergies to everyday stuff may result in the pyloric valve not functioning properly and allowing bile into the stomach. She went to a therapist who after looking at her endoscopy recommended her to do an exclusion diet of foods that commonly cause allergies and then gradually reintroduce foods to see which trigger symptoms. I think the exclusion diet allowed the digestive system to reboot a little and recover from the allergies so she was able to reintroduce almost all foods. I am doing the exclusion diet now and after two days I feel better.
Chelsea on May 15, 2017:
I am currently going through the EXACT same thing! I had my gallbladder removed a little over a month ago.... ever since, I've had the same symptoms. My GI performed an endoscopy and diagnosed me with Bile Reflux Diesease. I've missed weeks of work, and I'm waiting on more doctors appointments. The medicine I've been given does not seem to help any. I'm miserable every single day..... it is really starting to tear me down. I feel as though I can't get enough sleep either, and I'm not sure when or if I'll ever have some relief from this terrible diagnoses. They refuse to prescribe pain medication..... and I cannot find anything that helps. Although I know how painful and upsetting this is, I am happy to know others are going through the same thing and I'm not alone.
Mx2k on April 26, 2017:
Edyd Medina im 22 and got diagnosed with bile reflux gastritis in 2013 im drinking alkohol, smoking weed sometimes but its not affect me so much. Worst thing in this disease is eating right after you wake up, food cant be digest properly cause your stomach is full of very alkaline bile in the morning and theres no stomach acid so protein, vitamins n stuff cant be digested etc. i drinking Flax plant seeds or something like this everyday and lots of water after waking up also i dont eat dairy proucts cause i got allergy and stomach pains after this. Its basically untreatable condition and affect mental health cuz you feel hopeless : /
Edyd Medina on April 24, 2017:
I was diagnosed with Bile Reflux in January. I've been suffering with symptoms for years, and nobody knew what was wrong with me until I had an endoscopy. It is so important to get one done if you're experiencing similar symptoms. Doctors cannot help you unless they see what is going on inside. I have not had my gallbladder removed, gastric bypass, or ulcers. In fact, I grew up eating very healthy. I am only 21, and I have this upsetting disease. I also experience episodes, from time to time. My stomach is very swollen, I have been gaining and loosing lbs. You are right about the nausea it comes and goes. When it comes I feel extremely sick and I loose all of my energy. I realized that cucumbers helps the nausea, they are very alkanized. I stay away from alcohol because my symptoms will get worse times ten! I wonder if that has to do with something else, or if anyone with bile reflux has experienced the same thing with alcohol?
Satela on April 09, 2017:
I know what it means to have this. I was diagnosed with bile reflux 4 months ago, and i can tell you the symptoms i have is unbearable sometimes. My gastroenterologist told me i must try to manage with this so he prescribed some special herbal tea that is good for gall bladder. I feel nauseous every single day. I feel severe abdominal spasmatic pain. I am certain that i can't eat a lot of food. I just want that nausea be over. It really affected me emotionally, because nobody can help me. Only gastroenterologist understood my symptoms - he described me exactly what I felt. I know what you're going through and i certainly want to believe - there must be way to deal with this. I hate anti-sickness tablets so I drink that tea that makes me feel better a bit. I drink when i really feel bad. Plus i get sometimes light-headed, already have anxiety, even i don't want to admit it.
Kiwi1967 from New Zealand on April 06, 2017:
Hi, yes, you obviously have bile reflux... a lot of the doctors are ignorant about it. This page doesn't seem to be monitored, so please go to the Facebook page: Bile Reflux Support Group. The primary medication to help bile reflux is a prescribed bile binder, e.g. Questran, Colestid, Cholestyramine. I also take probiotics, digestive enzymes and psyllium husk capsules. These all keep my symptoms to a minimum.
redhead45 on April 05, 2017:
I had my gall bladder removed in Dec 16. I became very nauseous and sick about 10 days later. Went to Dr and they referred me to a gastro Dr. They did an ednoscopy and diagnosed me with gastritis but also told me my stomach was full of bile. I am not a big person and I lost 13 lbs which put me down to 112 lbs. I am 45 years old and have always had good health until now. They put me on carafate and protonix. The carafate was a lifesaver for me, but after about 6 weeks they took me off it. I only lasted a week and had to go back on it, but since then, it doesn't seem to be working as good. I have had the burning in my stomach again, bloating and constipation which I have been taking miralax for. They didn't come out and say I had bile reflux disease, only that I had bile in my stomach that could have been caused from the removal of my gallbladder. This is a very frustrating disease. But I was wondering if you ever feel like you have a lump in the bottom of your chest? Sometimes it feels like there is so much pressure pushing up and against my diaphram. That is the only way I can think to describe it. My pain is usually in my upper abdomen and on the left side of my rib cage just under my breast, kind of like a side ache. I also take an ativan once in a while for anxiety and it seems to help some with the nausea too.
LU on March 02, 2017:
I had the gb removal done one year ago, few months ago i started feeling bad, having constant nausea feelind dizzy and having headaches. My appetitte is so low, i dont know what to eat anymore. last month i started even feeling worse ,medication i am taking zofran and cholestyramine from this week. What other remedies you guys use, please help. Am I going to live like this always, how will i manage a normal life with all these symptoms being present all the time?
Jackie T. on February 25, 2017:
Thank you so much much for sharing what you are going through and it might just me have a better conversation with my doctor. I had my galblater (sorry for the Spelling) taken out after my 3 child at the age of 26. After thatI started having a really hard time with my stomach. Since then 2007 I have been diagnosed and undiagnosed with IBS, Meniere's disease, acid reflux, celiacs disease, stomach infection and lactose intolerance. Right now I'm taking Prilosec for the acid reflux and I'm taking Phenergan for when my stomach gose into spasm. For me I do sometimes get warning signs or symptoms such as sulfuric burps prior to my stomach going into spasm. If I can take the Phenergan before the spasm kicks in, and take a warm bath I can usually Ward it off or it will be at least less painful. I don't know if you've tried this medicine but it might help you if you can dry it if not I'm sorry but I do feel for where you're coming from. And I'm going to talk to my doctor about the same issue and see if maybe that's what I have and why they have not been able to diagnose it so far. Thank you very much.
Sandra Taff on February 07, 2017:
My husband experiences this quite often and is down for days at a time..I get so worried for him, but your article was an eye opener for the both of us. Thank you and God Bless
Denise on February 03, 2017:
So my daughter just found out today that she has this issue. She has gallbladder but bile coming up into esophagus. Nothing worked and we felt people thought she was crazy.
Kiwi1967 from New Zealand on February 02, 2017:
Hi, this is to the people who have recently posted. There is a support group on Facebook for people experiencing bile reflux. Do a search on Facebook for: Bile Reflux Support Group.
There are nearly 600 members and lots of experience and suggestions. Hope to see you there!
Bonnie-Lee Schoeman on January 31, 2017:
Hi Dragonlady 1967,
Oh my goodness!!!!!!! Eventually an answer to all my questions. I had my gallbladder removed and diaphragm rupture fixed and a anti-reflux surgery. The previous Doctor diagnosed me with Chron's disease which I knew was not possible because I'm always constipated but I was on a 6 month course of Cortisone and picked up a lot of weight. Eventually found the right surgeon because previous ones also didn't want to do anything. It took time to adjust and only could stand certain food. I lost 20 kg in total after the operation. 6 months later and I could eat anything under the sun. One problem....I can't pick up the weight again. I just want to pick up 5 kg. I weigh 55kg and I'm 1.71 meters tall. I've always been on the skinny side but this is getting out of hand. Like you people are also being nasty and calling me anorexic. It hurts a lot. At age 42 I've lost volume in my face and I look tired and old. Everyday I get told to pick up weight and no one thinks I'm eating. Just my family believes me because they see me eating. I'm fed-up with this and I've even had fillers injected in my face but still didn't get the results and I don't have the funds to keep on trying. Please start a support group.
Lyndsay on January 30, 2017:
I too have been diagnosed with bile reflex, after about 6 years of doctors telling me it was gerd/ gastritis, hard to hear that this cannot be fixed as it seems to have taken over every aspect of my life, just want this to be controlled, can't handle it anymore
Kiwi1967 from New Zealand on January 29, 2017:
Hi Evelyn, how can your doctor say it's impossible to have an obstruction of the bile duct, when your scan shows an obstruction! You have symptoms and the evidence is there in the scan. You can have a blockage of the duct even if your gallbladder has been removed. Your doctor is negligent! You need to see someone else. You may also be experiencing bile reflux, so a prescribed bile binder might help. You need to get referred to a decent gastro specialist who knows more than your current doctor does.
Beth on January 21, 2017:
I have recently been having a lot of bile taste in my mouth. I do have acid reflux all the time and no gallbladder. That came out 18 years ago after I gave birth. Now its so painful and on top of it I have back conditons so sleeping its either in a zero gravity that keeps my head up so heartburn does not help or I go to lay on my side for my back and heartburn and bile start their attack. Is there any otc or all natural ways to stop this?
Renae on January 09, 2017:
Thank you for sharing. I've been throwing up yellow bile for almost a year. I just started taking pictures because the doctor's didn't believe me. I cannot eat most days, i'm in pain daily so I'm praying for answers.
Cheri Grabbe on January 09, 2017:
I had my gallbladder removed June of 2015. I lost an unintentional 70 lbs of weight, I have nausea, vomitting, issues with smells, I had to change my entire diet and I take lots of supplements because of my poor appetite and feeling full.
I have been to countless doctors and finally had an upper GI Endoscopy procedure today where they found bile build up. I was prescribed two different medications today. One is a powder I have to mix in water and drink daily and the other is an oral pill they prescribe for people suffering with ulcers.
I'm not sure what is to become of me. This has been really hard living like this for so long. My friends and family don't really understand my issues with food.
I get tired of explaining it all. I don't care for the Gastro Doctor that I was referred to he is definitely not one to take time and discuss any thing with me. He made me feel like I was making up all of my suffering and he didn't discuss the meds he prescribed to me or what he found today during the procedure with the bile.
I just feel like I live this life alone and no one really gets it and the doctors don't seem very empathetic to my concern or willing to answer my concerns or questions.
I had to do my own research one I got home today after my procedure. I just feel blessed that I found all of you and they someone understands what I'm feeling and going through.
I think I'm going to ask to get a different gastro Doctor one I feel more comfortable with.
joyce davis on January 03, 2017:
I also have bile reflux plus acid and hiatus hernia, my gallbladder was removed 6yrs ago and it's the sorriest thing I have ever done. I just feel so ill all the time nobody believes me ,the pain and nausea are terrible and I also get really bad diarrhea. I feel so bad that I wish I was dead because this is not living it's existing.
Sue on December 31, 2016:
my daughter has been suffering with these symptoms for 7 years. We have desperately tried to find some relief - any relief (with little success) She recently came across diamtomaceous earth which has been a miraculous help!! She has lost so much weight that i was worried for her life. I am praying that this will be the solution for her! For the first time in years she doesnt feel nauseous ALL the time. Hope this information can help someone else.
GreenMind Guides from USA on December 25, 2016:
This is a good hub on an unpleasant subject -- thanks for your work here!
Kiwi1967 from New Zealand on November 20, 2016:
This page doesn't get used much now. We set up a support page on Facebook called Bile Reflux Support Group. There is also a support group for Bile Salt Malabsorption. These groups have many members and are great for discussion and suggestions.
Bhuvan Sharma on November 19, 2016:
I had a chronic vomiting 04 years back and my symptoms were very different. Whenever I consume fats, proteins and meals after body gets heated and stretch in my eyes. No doctor able to find. Few months back I was getting anxiety and fear in excess. It was uncontrollable.
I know that something wrong in my stomach and liver. I went through endoscopy and it was reflux with bile gastritis.
Past two months, I am on ayurvedic medicine and strict diet. My food allergies has gone down and anxiety reduced. Will continue the treatment and trying to move to cooler area.
mare on November 19, 2016:
I have similar symptoms . I can feel food drop into my stomach and i feel pain immediately. I have to take a drink ,some tums and try again or just deal with the pain. I get nausea and stomach pain but it will stop if i don't eat anything. I have not dropped weight, in fact i am heavier then i ever have been.
novie on October 20, 2016:
hii does anyone here experience pain on the back near you left shoulder blades? sometimes feels like stabbing pain under my left chest.. i was diagnosed with BRD a year ago i was wondering if was it a symptom of bile reflux? or is it something to worry about im afraid another problem will arise. i had my utz of whole abdomen and everythinh was normal. i hope i could hear from you guys soon! Hopes and encouragement for everyone. glad that i have visited this site i really thought i was travelling to this journey alone..
Mfilipek on August 31, 2016:
I have a multitude of issues...all started with the removal of my gallbladder and the fact that I still make stones. I've had 6 ERCP's and after the last one, I now have symptoms of BRD. I've seen specialists and they want to to a Roux -en -Y procedure...have any of you had this discussion with your doctors?
Allison Keir on August 31, 2016:
I had my gallbladder taken out four months ago and have had nothing but problems ever since. An endoscopy shows bile relaxing into my stomach. Questran has helped a bit with diarrhoea but the stomach burning is horrendous. HAve been given sucralfate, which I am supposed to take four times a day, but can only tolerate one a day as it makes me feel nauseous. I feel pretty despondent at the moment and would like to chat to anyone else going through the same nightmare.
Becca M. on August 29, 2016:
This was such a good read. I have never been more sick in my life, until I got BRD. Over the years it has become debilitating, and no one seems to understand. I'm now down 40 pounds, within the span of a year, and there are days I go without eating. I'd love to form a FB group to where we BRD sufferers can exchange stories, tips, and heartache! Thank you for this message!
DENISE HANLEY on July 28, 2016:
i have been living with problems with my stomach since i was like 20 years old i am 39 years old now and i found out in 2011 maybe 2012 the i have h-pylori so no matter what i eat i am always running in and out of the bathroom plus the combo of having no gallbladder it makes things even harder for me to eat things because if my stomach does not like it then its coming right back out so i never know what to eat because of the fact the my stomach the h-pylori and the no gallbladder keeps me from eating a lot of foods and half the time i do not even feel hungry doctors say oh you need to eat three meals a day and i am like how am i supposed to do that when i do not even feel hungry and when i do eat it doesn't stay in my system any way ever since my gallbladder was removed after i had my twin sons and now i have the h pylori i am afraid of what i can and can not eat i have found some things that i can not eat like tomatoes mushrooms tomato sauce corn regular milk i can only drink lactose free milk pizza sauce asparagus onions wheat almost any thing with flower any thing with acid in it beans i cant eat those top ramen noodles corn tortillas raisins whole grain and a whole lot of other items can any one help me and name some things can you can eat that is in the same position i am in no gallbladder and the h-pylori
Laurie on July 25, 2016:
I have bile reflux and it is a nightmare. After my scope was done they told me my tubing is not blocked but going the wrong way. So bile empties into my stomach instead of my intestine. I have not had any diagnostics done for a couple of years now and my new doctor is sending me for another scope as the barium test showed bile going all the way to the back of my nose. See, I lost my ability to smell properly (I smell one very awful smell no matter what the odor really is). After the barium result my doctor wants to see how much damage if any has occurred since my last scope. I am taking ranitidine and sucralfate until my next follow up appointment in a couple of weeks. The sucralfate is designed to empty the stomach contents quicker than normal. This is no fun either. With the bile in my stomach I already go to the bathroom a lot. The bile burns coming out believe me. I was told the first time this was diagnosed that there is no life style change or operation to fix this. (I have not had any organs removed). But now I have seen online that there is an operation that can be done to fix my tubing. When I have my endoscopy(for the 2nd time) I will be asking about possible operations. The burning and nausea and frequent bathroom trips makes every day a struggle. If your stomach is empty it burns and the nausea is very bad. If your stomach has anything in it (which temporarily feels better), that is a signal to your gallbladder to release the bile to aid in digestion, which then starts to burn as the food leaves your stomach. It's a vicious cycle. It is very difficult to want to eat when nausea has taken hold. Some people have pain when they eat, I have relief when I eat until my stomach is empty. And believe me, this disease can and does make a person feel depressed, and often times angry. Eating is one of lives pleasures and this awful affliction makes it a nightmare.
Kiwi1967 from New Zealand on January 15, 2016:
Hi, gastritis is gastric inflammation, so this could be due to your bile reflux. PPIs are great for acid reflux, but can make bile reflux worse. The only way to know if you also have acid reflux is to have the 24hr PH test. I got told for years I had acid reflux, but I don't... all my issues are bile related. The primary medication to help bile reflux is a prescribed bile binder, e.g. Questran... I also take probiotics, digestive enzymes and psyllium husk capsules. These all keep my symptoms to a minimum.
H on January 05, 2016:
I've been on Omeprazole (20mg a day) for the past month. I was only taking it as needed prior to that. However, in early November I got a stomach bug that triggered a gastritis attack that took about 3 weeks to heal after my doctors figured out what was happening. I had symptoms that were not congruent with GERD (gnawing stomach pain, inability to eat anything fatty, and near-constant mild nausea).
I was diagnosed with BRD yesterday following an endoscopy. I knew I had GERD and gastritis before so this is a new condition on top of what I already have. But, seeing the posts made me feel a little better knowing that I'm not the only one going through this ordeal. It definitely is not fun, but all we can do is take one day at a time and do the best we can with the situation we are in. Hang in there!
amsboss on October 02, 2015:
Kiwi1967 from New Zealand on August 03, 2015:
Hi, the primary medication that works for me and a lot of people with bile reflux is a prescribed bile binder. Questran and Colestid both have worked for me. Check out this link: http://www.drugs.com/drug-class/bile-acid-sequestr...
In addition to the prescribed bile binder, I take probiotics, digestive enzymes and psyllium husk capsules (psyllium is a natural bile binder).
This page doesn't get used much now. We set up a support page on Facebook, so if you are on FB look up Bile Reflux Support Group.
selia on April 09, 2015:
I have been ill now for 17 weeks and find myself back to square one. But I ran across this forum and I am convinced that I have BRD. I met with a new Dr yesterday (the 7 the Dr in 17 weeks) and I mentioned BRD and his response was I have never heard of that, like I made it up or something. I had him give me an Rx for nausea and pain, which we will see if it works. I have noticed that toast does help some what. Carafate worked in the beginning but not so much now. I did have my Dr fill out my FMLA paper work, as I have missed a lot of work. I would like to thank every one on this forum for making me feel like I am not crazy. I truly starting to believe I was crazy. But thanks to all of your input I know I am not. This is a day by day challenge and now with your support I feel up to the task.
Kiwi1967 from New Zealand on September 21, 2014:
This page doesn't get used much now. We set up a support page on Facebook, so if you are on FB look up Bile Reflux Support Group.
MichelleDelynn on September 18, 2014:
Is anyone still here? What happened to Dragonlady?
erw504 on July 06, 2014:
THIS IS NO JOKE- I suffered from Bile Reflux since 1986. I know all about this disease. My DR,s at The V.A. where treating me for H-Bacter Pylory- they did not associate it to my BR/Dis or my accompanying GERD. I week after the treatment I realized my B/Reflux and GERD where GONE. If you need to know more about me to believe my story you can connect to me at email@example.com. I haven't had 1 single occurrence since!
Kiwi1967 from New Zealand on June 05, 2014:
I haven't been to the website for a while.... there was too much spam. We have started a Facebook page... search for Bile Reflux Support Group and request to be added. Cheers, Karen
Churro8 on June 03, 2014:
I don't now if you still run a webpage but the on yo did ave is no longer running. I would like to catch up with you and the rest of the group.
Kiwi1967 from New Zealand on February 12, 2014:
Hi Cherie, I take a bile binder for my bile reflux, which works well most of the time... Colestid (same as Questran). Join our Facebook page... search for: Bile Reflux Support Group
cherie on February 11, 2014:
I have also just been diagnosed with bile reflux disease after an endoscopy after a bout of pancreatitis while also suffering from post viral syndrome for 7 months. I am a 27 year old female and 7 months ago I was an incredibly fit and healthy person before I contracted some unknown virus and my immune system went into overdrive. I have had liver pains which they mistook for gallstones and so I battled nausea and pain for a 7 months until things got so bad that I was vomiting all the time and haven't eaten a meal for 2 months (just on liquid replacement meals) being told that it was just part of the post viral condition.
My post viral syndrome was very severe but is getting better slowly. I have lost all my health and fitness and so much weight which was difficult because I was a tiny person before all this. I was at the peak of my life in health before this virus.
I am on a medication called Nexium and hoping it works. I am so happy to hear what works for other people, thank you all for sharing different things that can help. Enzyme supplements didn't work for me (maybe they will later once the medication kicks in). They said I have a lot of damage to my stomach that has been happening for a long time, is there anything people know can help this? Also most people I talk to seem to suffer from this condition due to having their gallbladder removed (I still have mine), does anybody know of someone with bile reflux disease caused from a virus?
Sue7 on January 01, 2014:
Kiwi1967 from New Zealand on December 31, 2013:
Hi Sue7, no I haven't, but if you join our Facebook page someone else might have tried it. Search for Bile Reflux Support Group on Facebook. I find bile binders work the best... I'm on Colestid.
Sue7 on December 31, 2013:
Has anyone on this list tried niacin or Niaspin to combat bile reflux?
TanyaCH on December 14, 2013:
Hello everybody.. My name is Tanya. I have had the same health problem as everybody on this blog – bile reflux.
I actually found this blog 3 years ago while I was looking for any help.
I am 99% better then I was 3 years ago before I found the way to cure myself. I have my life back. 3 years ago I thought I was dying and nobody could help me.
So, I would like to share with EVERYBODY that it is REAL to cure bile reflux. You do not need to suffer anymore.
Bile reflux problem I fixed with NAET treatments and hiatal hernia with a help of the chiropractor.
You can read the whole story at my website: http://allergyfreeforeverway.com/reviews/sickness-...
The only natural remedy that helps in our case is Bentonite Clay. Please read about it: http://allergyfreeforeverway.com/266.
Most people suffering from bile reflux do not understand that the underlying cause of this problem is multiple allergies to different foods, minerals, vitamins, etc.
I even created my blog because I wanted to share and help people who have the same health problem as I had.
If you have any more questions, please send it to my e-mail firstname.lastname@example.org
All my best,
Kiwi1967 from New Zealand on December 05, 2013:
A facebook page has been started for people who suffer from bile reflux. You can find us under Bile Reflux Support Group.
God's Son on December 05, 2013:
Drew and All,
I started taking DGL licorice about two week and I feel the effect very well - the constant burning of the stomach has gone down significantly. It helps the mucosa to heal. I also take probiotics and vitamin E; I get all these from the health food store. You can read about them and try them. God is our ultimate healer. Goodluck!
Drew on November 17, 2013:
I too deal with this horrible problem. Had an endoscopy also which showed gastritis, esophagitis, and lots of bile just laying in my stomach.Normally Im 6"2 180 and got down to 140lbs nauseuas constantly its no fun at all for sure
Tracy on October 25, 2013:
To bile gastritis sufferers...
My mother used to suffer the symptoms of bile gastritis, GERD and LPR. But those symptoms went away when I took her off nexium and put her onto betaine HCL with pepsin supplements (she has low stomach acid - a very common cause of reflux conditions) and vegetable digestive enzyme supplements.
My mother's GERD and LPR symptoms were gone in a few weeks and bile gastritis symptoms were gone in about a year. The symptoms return if she stops taking her supplements.
What is that magic ingredient to get rid of bile gastritis symptoms though? I mean the GERD and LPR were due to insufficient stomach acid and not enough enzymes to help with digestion. But bile gastritis? Well the answer to that question is proteases (enzyme that digests proteins)!
Excerpts from the EnzymeStuff article "Digestive Disorders and Enzymes" - Enzymes and Gastritis...
"..there are lots of clinical studies which clearly show that taking proteases significantly speeds up healing of ulcers, gastritis, and wounded tissue."
"Proteases help reduce inflammation, clean out debris and infection, and stimulate healing."
Indeed it does. :)
Kiwi1967 from New Zealand on September 26, 2013:
Hi Matt, my bile reflux started after my gallbladder was removed too... exactly three months after it. It took them a year (and lots of tests) to fianlly diagnose me with bile reflux. Apparently it is common, but hard to diagnose. I also started to have diahorrea around the same time and thought I had Irritable Bowel Syndrome, but it turns out that some people with bile reflux get bile salt diahorrea... makes sense really. I don't have the gut motility problem like you do, but the answer to that is by taking Motilium... this is the only medication available to speed up the smooth muscle action and empty your stomach faster. You can get it on prescription here in New Zealand, but I know some countries don't have access to it. The other medication to take is Questran (I take Colestid, which is the same but a different brand)... this binds to the bile and gets it out of your system faster. You need to see a gastro specialist and put this to them. Good luck!
matt on September 25, 2013:
hello I am 30/yr old male who has all the same things I was diagnosed with gastritis and colitis as I had bile from both ends all the time.everytime I eat anything I feel sick all day and sometimes I feel so weak Im almost useless. I had my gallbladder removd during emergency surgery after a car crash in oct 2011 and have been miserable since. last ct scan showed something like stomach folds and abdominal wall were thickening w/e that means and endoscope showed food retetention even tho I fasted for 2 days.it is really affecting my life now and I don't know what to do. im so tired of being sick and my guts always hurt any advice plz dragonlady
Kiwi1967 from New Zealand on September 12, 2013:
Hi Sara, it could be. Bile reflux is really hard to diagnose and it took them a year to give me an answer (after heaps of tests)... finally after my third scope they found bile in my stomach. Doctors don't seem to know much about it either and some have a tendency to blame stress as the cause of the symptoms... when in reality it's bile reflux (although stress can make it worse). Everyone with this has different symptoms too... when I'm bad I have: a constant lump feeling in my throat, raw and sore throat, hoarse voice, nausea, occasional cough, difficulty breathing (more at night... when lying flat and inhaling some of the bile), and heartburn. I remember reading on the bile reflux support group website about a guy who has the gnawing feeling in his stomach and he said eating a lot helped it to stop. My bile reflux started three months after they removed my gallbladder (this happens a lot apparently), but you can still get it if you have your gallbladder intact. I take Colestid (same as Questran) and this is a bile binder... I take one sachet every morning mixed with fruit juice before I have breakfast and it helps. You should take some bile reflux info to your GI and ask him to prescribe this for you... or at least get tests for bile reflux done.
Also try some natural remedies: Glutamine, DGL licorice, slippery elm bark powder, probiotics.
Sara on September 11, 2013:
I went to a Gastroenterologist last year after losing 20 pounds because I was afraid to eat because I would suffer severe pain in my upper stomach that would last 2 hrs at a time. I thought it was my gallbladder but the upper endoscopy showed I had 5 large ulcers and severe gastritis. She told me mine were caused by stress. She gave me Dexilant and it helped me. I no longer have pain but for the last few months my throat stays raw and itchy where I cough all the time and I have this constant gnawing in my stomach and have to eat something to make it stop. I have nausea all the time and when I drink something I feels like my throat closes up and it hurts as if I have something lodged in my chest. I did not hear anything about Bile Reflux Disease from my Dr but from everything I have read here it makes me wonder if I have the same thing.
Bile Pain on September 06, 2013:
I just recently read a book about a guy who was suffering with bile reflux and he was able to overcome the disease. He used Diet, fasting and other Natural means to do it. I am doing it and I'm getting the results, he focuses on the cause of the disease and not just taking prescription drugs, which is just a band-aid to the problem. I put to rest the carafate. I'll recommend it to anyone, its called Defeat Bile Reflux on Amazon. The information is priceless..
JenW on August 28, 2013:
Also I forgot to mention. It seem like the longer you do this medicine the better it works like with all medications. And by all means do your research. There are hundreds of strains of this plant and each one has different effects. Sometimes you need to adjust because you get used to the strain and you need to switch. As you research you'll find out some strains are better for migraine headaches ect.. If your state supports MM a distributor will help you pick the right one or product. So make sure you tell them what your ailments are when getting your first dose. It makes a huge difference. I still have trouble eating a lot of red meats and corn and things that are hard to digest and stuff. But I can actually eat a wet burrito and chocolate mouse now with out dying! I'm loving life again! MM is also a mood altering drug it really helps with anxiety and depression too. I also notice I can deal with the pain and burning a lot better too.
Hope this helps and Good luck!
Be well Jen
JenW on August 28, 2013:
Ive tried to read most of the posts here which is huge. I have not been diagnosed with BRD yet but is exactly what everyone is saying. I have seen 3 doctors that say they have no idea why I have all these symptoms. I have a few differences for example I don't vomit, it comes out the other end. BUT I absolutely HATE throwing up so it is almost like my body pushes it the other way to get out.(and when its at its worst I pass food right out still looking chewed and nothing digested at all. like a cheerio that wasn't chewed well is still floating it comes out that fast. Sorry for the graphic details but its real.) When they tried prilosec and the others alike, I swear they almost killed me. I lost weight so rapidly it gave me low blood pressure due to baggie veins is how the doctor explained to me. My heart is banging in my chest and have low pressure. All due to the rapid weight loss, I lost around 28 lbs in a week in a half. I am a small framed person being when I was normal 130-135 lbs. and 5 ft 1" and now at 108 lbs and have it under control where it doesn't drop below 108 thank goodness. Anything below 108 and my face gets gaunt looking and you can see my rib cage in my upper chest its awful and makes you feel like your dying. I now have my bp under control as well. I was diagnosed in 2000 with Graves disease. I had my thyriod removed immediately and removed completely because of rare complication with it. I was ok for about a 1yr and then this started. Ive had every test known to man done. One of the tests is where you drink a bunch of white stuff and lay very still for like 40 mins while they watch it move through you. They were astounded when they seen it fly through my system. It would leave my stomach fly through the small intestines and then it turns around and goes smashing up into my stomach again violently, with all the bile in it. With a scope I have now 3 small ulcers starting on the gallbladder side and my stomach lining is bright red and irritated. I have my gallbladder but been in the hospital a few times wondering if they should take it out. Never had any stones but it was full of what looked like beach sand. and on rare occasion can see that when I have real bad diarrhea days. Along with 24-7 nausea and severe horrible pain from (and it varies from day to day) my stomach all through my intestines even some days my colon. I have days where if I'm in pain in the lower tummy I even limp because it hurts so bad to put pressure on one side of my body. I had at one point drank Mylanta like it was water just to control the pain (specially in my stomach for the burning) I sometime get pain in my upper back just below my shoulder blade like someone is stabbing me from front to back in an upward angle from my stomach. Not to mention the sever depression and anxiety that comes with this as you all know.Finally My brother in-law suggested (depending on the state in which you live and the laws) to try medical marijuana. That it helps with nausea in cancer patients and helps deal with pain. It was a miracle drug! HOWEVER, it doesn't cure you, but it does help with nausea and I have been able to eat and now have an appetite. I can manage to keep my weight in check now when episodes come. I don't know if I would have lived through this without the Med marijuana. I had a hard time functioning in daily life before it. I have my license for it and it does NOT have to be smoked. The best form I found was the cannabis drops. It is the oils pulled from the plant and infused with an alcohol base. you put a few drops under your tongue and it is like a miracle, you can actually feel the nausea wash right away in seconds. They also have edibles, candies, cookies but if your like me and nauseated anything you try to eat make you want to throw up so that doesn't help. and you could get the "buzz" part from that stuff. The drops are the best if you don't like the feeling that comes from eating, vapor, or smoking. Especially like me I'm finishing up my BA in design and frequently need to do presentations in front of people of stature. I don't need to be all buzzed up I need to keep a clear mind. In some cases I will do vapor and those are for they days my ""episodes" kick in and especially for the stomach spasms. It totally changed my life, where I can now function every day even through the episodes. I don't miss work and school any more and can go out with out fear of needing a bathroom when with friends. As I said before it doesn't cure you, but thank you lord there is some relief so you can do the things you used to and try to live a normal life. Here is a link to get the information you need where you live. http://medicalmarijuana.com/
or you can do your own research which I would recommend. If you are anything like me and are sick n tired of being sick and doctors telling you "here take this or that" and there is no help. Please I urge you to at least try to see if it helps you as well. You wouldn't believe what a miracle drug it really is. Oh and they also have a pill capsule you can take too, but according to most cancer patients it doesn't work as well. Everyone is different and with what type and kind will work well for you. The last doctor I saw recommended to look on line and talk to people to see if they could find what helped others. I'm glad I took my brother in-laws advice. It really helps you control the suffering. I hope this post helps and god bless all of us with this horrible affliction! Oh and btw I failed to mention I had been put on drugs from Reglan all the way to Famotidine. which none ever helped most made things worse or just added to my misery. I really do not trust man made medicine any more any way. One doctor seemed to think that the BRD is from being overdosed on my thyroid meds for 6 yrs. and told me basically I am screwed and going to be this way the rest of my life. Again I hope this information helps sufferers alike reading these posts! It has help me tremendously try to live a normal life and it could help you too! =)
Be well, Jen
God's Son on June 28, 2013:
Dragon lady, how you been. It's been a long while...
pchall on January 31, 2013:
hi kiwi , thanks for that you could have a strong point there , that would explain why im great somtimes then no so good others , i will talk to doc after my tests
Kiwi1967 from New Zealand on January 29, 2013:
Hi pchall, I know you have bile reflux, but can't remember if you were also diagnosed with acid reflux too? I'm presuming you have acid reflux as well if they are giving you a PPI (Pantoprazole and Lansoprazole). Unfortunately I've read that PPIs can possibly make bile reflux worse... they are still unsure about this, but I know PPIs certainly didn't help me. Have you tried Questran? That has helped me a lot with getting rid of the bile faster. I've also had 'episodes' of bad bile reflux symptoms (and I've read it's the same for others)... don't know why this is when your body is constantly producing bile anyway.
Check this link out... it's a good comparison of both bile and acid reflux:
pchall on January 29, 2013:
hi kiwi , good to hear from you . i have just changed my drugs from pantoprazole 40 mg to lansoprazole 30mg , started coughing again (reflux cough) and abit if sternum pain , seems to go in stages with me . 4 5 months great then flares up again , have ask the doc to test me for lactose aswell,
Kiwi1967 from New Zealand on January 27, 2013:
Hi pchall, great that you are doing better. I'm okay... in saying that I'm home today with stomach pain, but not sure what it's related to. I'm still taking the Colestid (same as Questran, but subsidised here in NZ) and that works for me. Have generally been fine, with just the occasional symptom. Hope you stay well.
pchall on January 24, 2013:
hi kiwi , i know its been ages , but to be honest ive been quite well with my reflux .Wanted to know how your getting on , and have you found anything to help you .
Kiwi1967 from New Zealand on November 20, 2012:
Hi chey11, all the best with the surgery... presume it's a nissen fundoplication. I had one three years ago for a hiatal hernia (then my gallbladder removed two months later). They didn't realise I had bile reflux until 18 months (and lots of tests) after the surgeries... the symptoms were a mystery to them. The surgery might help the severity of your symptoms, along with continuing the Questran. I have been more or less symptom free (but need the Questran to be so)... although still have the occasional random 'episode' for a few days (as I am now!). I agree with AllyPie, what you eat is important and you need to avoid anything that triggers the reflux... coffee is really bad at doing that for me, so I drink decaf or just stick to tea.
I lost about 11kgs after the surgery (but I needed to), but gained weight a year later. I guess because of your existing weight loss you need to stick to a 'weight gaining' regime.. a nutritionalist should be able to guide you with that.
AllyPie on November 20, 2012:
Hi chey11. I understand how it feels to be sick of feeling sick. You are in my thoughts and prayers and I hope the surgery is a success. Just keep on keepin' on ;) I've been on a strict diet since my last bout in the hospital and the diet does seem to be helping (me at least). So don't loose hope. Lots of love and light to you on this difficult journey, xxx
chey11 on November 19, 2012:
I haven't posted in 13 months but I do read the post on this site often to see if there are any another things to try that are working for other people. My first post I explained what I was going through:
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.
Since this post I was put on Amitriptyline (not sure if I spelled it correctly), Questran, and nexium. This worked so good for about six month then everything came back and I was so sick again. I have been on everything they could think of and I failed everything. So I finally went back to the GI a few weeks ago and he decide to go through with the surgery. I am not looking forward to this but I am willing to give it a try. I did some tests an found out I was a great canidate for the surgery so I see the surgeon in two days. I am hoping this will give me some kind of relieve but I am really not looking forward to the diet and losing more weight. I am currently on medication to help me gain so weight before the surgery. I am hoping everything goes well and I can give you all some positive feedback.
Hang in there everyone and hopefully we can all find something to help us all get back to some kind of normal life.
God's son on October 21, 2012:
God bless you AllyPie, and good health to y'all
AllyPie on October 13, 2012:
Thanks for your reply Kiwi. I am currently on Questran and my bile salt diarrhea is under control now, thank God! I'm going to see a gastro specialist next month so hopefully I'll gain better understanding then. So thank you for your suggestions and info; it is spot on. It is such a relief to talk to somebody that understands what I'm going through. God bless and good health to you Kiwi1967.
Kiwi1967 from New Zealand on October 12, 2012:
Hi, I've had bile reflux for about 6 or 7 years (not that I knew what it was for most of this time).... it wasn't until 6 months after my gallbladder got taken out that it got really bad (this was 2 years ago). I had the bile salt diarrhea too. I can't comment on the colitis, but I can tell you that taking Questran has combatted the majority of my bile symptoms... along with cutting caffiene and chocolate out of my diet. Questran is primarily used for people with high cholesterol, but because it binds with bile, it helps excess bile get out of your system faster and stops the reflux. It took a few weeks to have good effect and now I'm just taking one satchet a day. You really need to see a gastro specialist about your queries. All the best.
AllyPie on October 11, 2012:
Hi there, my gallbladder has been removed several years ago and I've suffered from gall reflux and all that goes with it ever since. Two weeks ago, while having a very bad case of bile salt diarrhea I was also diagnosed with diffuse colitis. Does anyone know if the colitis could have been caused by the bile salt diarrhea or has anyone had a similar experience perhaps? And what about Crohn's desease - does it tie into gall reflux at all? Thanks for this amazing site and for sharing experiences and info - it really does help :)
Feeling Alone on September 22, 2012:
I haven't posted for some time but am feeling so much better that I honestly didn't think of it! I did take cholestyramine (generic Questran) for several months but I am not taking it now. We have gone completely organic in our eating and it has made huge changes. I am also gluten free. I have found that in addition to bile issues, I have major other digestive issues. Of course, the docs call it IBS. I think that's the dumping diagnosis when they don't know what is wrong. Anyway, I had another huge gain when I started to follow the FODMAPS diet. You can google it but basically, for me, some vegetable and fruits, along with milk were causing my huge issues. I have to be very careful not to get any onions or garlic, too. Apples are out. Interestingly, I can eat blueberries and I love them. Good luck to all of you and if you need other info., check out my blog at www.healingcenterofmaine.com
PROUDGRAMMA on September 02, 2012:
I found this site by accident,and my Heart goes out to each and everyone of you,I honestly feel I was led to this site by GOD, i know of Family and Friends who have suffered through this also.I don"t promote this product,i have just seen such miraculous things with it.It is a Natural,Organic,no preservatives or additives.It"s called SASCO ALOE VERA LIQUID.2 oz in morn 2 oz before bed you can increase it as you feel needed,or decrease as needed. by the way.Also does not effect any meds taken now,it will enhance them.aswell as you may go off of some,because you may not need them......CHRIST WAS ANNOINTED WITH ALOE.......GODSPEED TO ALL YOUR HEALTH.......SASCO ALOE VERA..I"ve only seen SASCO ALOE VERA WORK......PLEASE: JUST ONE OF YOU TRY IT...I PROMISE MORE WILL FOLLOW SUITE........NOT A SALESMAN........A LOVING CHRISTIAN
quiltinfool on July 21, 2012:
Same for me - the bile salt diarrhea is gone and I'm sure the Questran is the cause. Hooray!! I would love to get the Motilium, but in order to get it from Canada, I would still need a Dr's prescription - and the doc could lose his/her license in prescribing it..... so I'll have to wait for the makers of Motilium to pay our FDA whatever it takes to get it approved in the USA. Funny our FDA approves Reglan, that has horrible side effects, but not Motilium that actually, you know, helps our disorder. Go figure. But, for now, the Questran works and I am sooo very thankful. I also agree that coffee is a no-no - along with chocolate, citrus and alcohol. At lease we have these options that help us.
Kiwi1967 from New Zealand on July 21, 2012:
Just a warning, Questran can cause constipation... you may not get it, but it is a common side-effect. This worked out well for me though, because I got bile salts diahorrea when my gallbladder came out, so now things are working a bit more normally.
Kiwi1967 from New Zealand on July 21, 2012:
I take it just before I eat... because it's in powder form it starts working pretty quickly. It's lifespan is about 3-4 hours, whereas the Motilium has effect up to 8 hours (if I were you I'd see if there is some way this can be accessed... check out online options and ask your doctor). Note that I am not symptom free all the time, but it has helped a lot.
Also stay away from caffeine... no coffee or tea. I drink decaf now. Coffee and chocolate are the two foods that make me heaps worse.
quiltinfool on July 21, 2012:
I find the Questran works better on an empty stomach as it binds with the bile in my stomach before I eat anything. So, I have it before breakfast, do my workout and then eat. Same with dinner. It is a godsend for those of us in the USA as we can't get the Motilium.
Hope you feel better as time goes on. Just stay away from chocolate, alcohol and especially anything citrus.
guest on July 21, 2012:
I started the Cholestyramine last night at a half dose with a meal. Immediately after I took it it began to weigh heavy on my stomach. This passed within 30 minutes and suddenly my stomach relaxed. It usually feels like I've swallowed poison (alkaline battery anyone?) which leaves my stomach constantly tossing, but for once my stomach just felt... normal! This morning I'm back to a bit of tossing, but I look forward to continuing the cholestyramine! Thank you for the information guys! It was because of you that I was prescribed this stuff, my doctor had no idea what would work to help and was open to suggestions.
Thank you thank you! Even 30 minutes of feeling normal gives me tremendous joy.
Kiwi1967 from New Zealand on July 20, 2012:
Hi guest, I know the other surgery you are talking about... moving the bile duct. It is a very risky surgery and my surgeon only knows of his colleague who performed it once and the patient died (due to leakage??). But then again I live in little old New Zealand, so they probably have more skilled people in the states (if that is where you are from).
Give the drugs a go first and give them time... my specialist said to wait 6-8 weeks for and effect and he was right. I think you really need to be on both Questran and Motilium... so hopefully you can access Motilium where you are. I've read of some people in the US buying it via Canada (I think it was Canada)... online I presume.
I have recently switched from Questran to Colestid (same properties and function), but because Colestid is fully funded by the Government here I only pay $3 a month instead of the $53 I was paying monthly for the Questran. Not sure how medication funding works over there (if you even get funded at all), but if you are stuck with a really expensive medication it pays to see what the other options are.
Just another tip when going on the Questran, only start out using it a couple of times a day and work you way up if you need too... according to my specialist it is not good for the structure of your bile to be on a high dose of this long term. I take it at breakfast time and at lunchtime... I don't bother at night because most of my symptoms are worse during the day. But as I said everyone is different.
guest on July 20, 2012:
Thank you very much for the advise. I hesitate on that surgery only because if i could not reflux the bile out of my stomach I'd suffer much more. The horrible nausea builds up until I get it out. I was curious if anyone has heard off success with the surgery that moves your bile duct further down the small intestine? My doctor was at a loss for what to do, she has never had a patient with this problem. However she was willing to learn and we did decide on Questran as our first gander. Unfortunately they forgot to send the prescription over to my pharmacy so I am still waiting on that. Here's hoping it works miracles! As far as cutting out citrus and alcohol, I couldn't tolerate them even before this became a consistent problem so no qualms there! I haven't noticed a problem with dairy, but I will try cutting it out and see how it works.
quiltinfool on July 19, 2012:
Get the Questran and stop the carafate. If you can get the Motilium, do - but if you're in the USA, you can't. So, Questran is your best bet. And stay away from chocolate, citrus, alcohol and dairy.
Kiwi1967 from New Zealand on July 19, 2012:
Hi guest, The thing with bile reflux is that the symptoms are so different for everyone. I'm sure I had the symptoms of it before I had my gallbladder out... two months before the gallbladder surgery I also had a Nissen Fundoplication surgery (top of the stomach wrapped around itself and the oesphagus to create a new upper valve) for my hiatal hernia. Six months after these surgeries my current symptoms started. So for the last couple of years 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 this time have come back normal, but a gastroscopy finally showed bile in my stomach. Bile reflux is not easy to diagnose, but according to my gastro specialist it is quite common. My 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 (to increase stomach emptying) and Questran (Cholestrymine) powder (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. These seemed to have helped... I've been on them for 2-3 months now. Your reflux sounds more extreme, so if meds don't end up working for you, you could try Nissen Fundoplication surgery as a last resort (to tighten the top stomach valve and stop the bile going into your throat)... Google it. Check out this site for general information: