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Living With Bile Reflux Disease: When Your Stomach Hates You

Living with bile reflux disease? You are not alone

Living with bile reflux disease? You are not alone

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 of 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 where I constantly wonder if the doctor even believes me.

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 the condition. 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 when 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.

My Symptoms

The symptoms of bile reflux disease are very simple and short. However, each one packs a powerful punch on 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 of 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 the 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 their 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.

Comments

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:

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.

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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:

hi guys...

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 (jmdhello@gmail.com)! 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:

Hi Chelsea,

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:

Hi,

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:

Hi dragonlady1967.

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.