Relentless bile reflux / pain

Posted by stephieisabella @stephieisabella, Mar 10, 2017

Hi all,

In short, I've been suffering from the following for the last 2.5 years...

- daily burning in esophagus from reflux pretty much immediately after meals, can last for up to 2 hours
- dull, progressive pain on right side of abdomen just next to belly button and under rib. Can be sharp sometimes and radiate into right shoulder. Longest stint of pain was 4 - 5 days. Worse after eating
- burping and trapped air which causes sharp pain in my back
- Reflux is so bad that food gets stuck on its way down my food pipe and throat hurts a lot in general
- consistently yellow stools - been like that for years now
- Frequent 'IBS-like' symptoms - bloating, sharp cramps, intolerance to fatty heavy foods

I've had the following tests...

- x2 gastroscopy (gastritis and biopsies showed inflammation)
- x1 colonoscopy - clear
- H pylori breath tests - clear
- Fecal elastase to check pancreas function - clear
- Parasite testing - clear
- x3 ultrasounds - all clear
- HIDA scan - around 78%
- various blood tests (LFT, renal profile, CBC etc etc) - all clear apart from a slightly high white blood count during my worst time of pain
- food intolerance testing (celiac, lactose etc) - all clear
- MRCP - all clear

Here's what I've tried...

- lifestyle changes: I've cut out fatty, fizzy, acidic and spicy foods, eating smaller and more frequent meals, elevating pillows at bedtime, not wearing tight clothing, not bending down after meals, not eating too close to bedtime, stopped drinking alcohol, chewing food properly and thoroughly
- omeprazole, esomeprazole, rantidine, gaviscon advanced - no help at all
- cut out gluten and dairy for months - no help
- digestive enzymes, ginger tablets, silicolgel, cold milk, ginger beer
- apercap, colpermin, mebeverine, amitriptyline, prozac, buscopan
- apple cider vinegar, ginger tablets, chamomile tea, milk thistle
- good strength probiotic
- beet juice, potato juice, parsley and all the good stuff for gallbladders

Sooooo totally running out of options here. Seen two specialists, been told I have bile reflux and IBS and that there isn't much else for me. Can anyone shed some light? I've just started charcoal tablets today.

Note... I never get the right dull ache in my abdomen and the reflux at the same time. It is always one or the other. Been told NO to gallbladder removal and that I am too young to have problems with it (I'm 22).

Interested in more discussions like this? Go to the Digestive Health Support Group.

Maybe have dr Try stool analysis . It might help.

REPLY
@saucy

I cut out fruits over 2 years ago! I loved them! Some vegetables that were really fruit like peppers and cucumbers really anything with seed, I cut out over a year ago but started carnivore about 6 weeks ago and don't have that gas and blasting after eating. As a side note I don't eat any carbs including breads, pasta, cereals ect. It's a great sacrifice but when I start feeling better it's worth it. When I cheat I pay the price for several days but it takes till the next day before I feel the effect. You can go online and see the carnivore diet or go to Dr Wolfson's website he talks about it.

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Hi Saucy. It's been 3 years since you made this comment... i'm wondering how you are feeling now and if you've remained on a carnivore diet, or if you've been able to reintroduce some plant foods without symptoms. I have had similar symptoms to the original poster above for years. Even had my gallbladder out last year due to low HIDA scan result. Gastritis is worse now. I know that gas buildup and/or slow motility in the S.I. is the underlying cause of my bile reflux, but I haven't been able to find a diet to fix it. Pure carnivore is tough for me because my stomach is already inflamed. High protein and fat stimulate more acid and bile which then irritates the tissue. PPI, sucralfate, DGL, eating small meals often have all helped take the edge off the pain but aren't actually fixing the issue.

I even went to Mayo a few months ago and they ran a bunch of breath tests and an Esophageal Impedance test on me. Zero useful results and zero guidance from them other than "maybe constipation is playing a role in symptoms"

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Is the original poster still here? That's my exact situation and it's been going on for years. On a bile binder and tried colofac and those other meds. Been referred to surgeon but no dates or guarantee he'll hear me out. Late 20s female, very low fat diet, chronic RUQ pain and bile reflux, going on four years and keeps getting worse. ef is 83.

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@mco1989

Find a surgeon who will remove your gall bladder. Everything you shared it straight out of my life story pretty much to a T. All my test came back normal or ok. Finally found a surgeon who said it's your gall bladder. Two weeks later he took it out. I woke up in recovery and felt better instantly. Even though all my test came back normal my gall bladder had enlarged walls and was full of sludge. About 9 months after I had it out everything started happening again. It felt like my gall bladder had grown back. I ended up having Sphincter of Oddi dysfunction but from what I've been told and have read they won't do an ERCP if you still have your gall bladder. Having your gall bladder out is a less risky procedure so that's where I'd start. I was 21 when I had my gall bladder removed. I dealt with the same symptoms you are having for over 2 years before I found a surgeon who listened and removed my gall bladder.

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Hey! I know this is from a long time again but how are you now? How was the sphincter of oddi dysfunction diagnosed?

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Hey! I know this is a long shot since this post is from a long time ago but how are you now? I am struggling with the same things and am desperate for answers

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@jsnellcallanen

Hi Saucy. It's been 3 years since you made this comment... i'm wondering how you are feeling now and if you've remained on a carnivore diet, or if you've been able to reintroduce some plant foods without symptoms. I have had similar symptoms to the original poster above for years. Even had my gallbladder out last year due to low HIDA scan result. Gastritis is worse now. I know that gas buildup and/or slow motility in the S.I. is the underlying cause of my bile reflux, but I haven't been able to find a diet to fix it. Pure carnivore is tough for me because my stomach is already inflamed. High protein and fat stimulate more acid and bile which then irritates the tissue. PPI, sucralfate, DGL, eating small meals often have all helped take the edge off the pain but aren't actually fixing the issue.

I even went to Mayo a few months ago and they ran a bunch of breath tests and an Esophageal Impedance test on me. Zero useful results and zero guidance from them other than "maybe constipation is playing a role in symptoms"

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I’ve been dealing with stomach issues ever since they removed my gallbladder. It made my IBS 1000 times worse. Then last November I started having my food feel like it goes up into my chest and it came on very suddenly after I had eaten some coconut milk yogurt. I think I might have SIBO. I wonder if you could also. I don’t like to take antibiotics because I’m allergic to most of them, so I’m thinking of trying oil of oregano. I might check with a naturopathic physician first. I’m vegan, so I’m on an all vegetable diet, but one thing that really seems to be killing my stomach are sweet potatoes of all things. I mean, there are some days when I just can’t eat anything, but I notice they make me feel worse. I put all my food in the blender and that helps. I do occasionally eat some canned salmon, so I can get enough protein, but it takes forever to get digested. Good luck to you.

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@tbauery

Hey! I know this is a long shot since this post is from a long time ago but how are you now? I am struggling with the same things and am desperate for answers

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Have you tried an alternative doctor to see if you have SIBO? That’s gonna be my last shot because if they don’t find something I’m gonna starve to death. I’ve been reading about oil of oregano which can kill off the bad bacteria and reduce inflammation. You’re supposed to be under a doctor’s care though because apparently it can be quite strong. Just a thought! Good luck.

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@otgb1230

Is the original poster still here? That's my exact situation and it's been going on for years. On a bile binder and tried colofac and those other meds. Been referred to surgeon but no dates or guarantee he'll hear me out. Late 20s female, very low fat diet, chronic RUQ pain and bile reflux, going on four years and keeps getting worse. ef is 83.

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I’m having a problem where my food goes up to my upper stomach and then sits there for like 10 hours and it hurts really bad and I can’t exercise or anything. Some days I can’t eat anything and I’m really skinny. I’ve been researching it and wondering if I have SIBO. Have you ever thought of that? It’s just a thought. They want me to have a colonoscopy/endoscopy and a CAT scan, but I think I might go the alternative route first. Traditional doctors always seem to mess me up worse, like when they wouldn’t listen to me when I had Classic signs of gallbladder issue and they ignored it and then six years later my gallbladder died and I had to have it out and now my IBS is 1000 times worse. It’s just a thought. It’s so dreadful not to be able to eat. If I get any skinnier, I’m not gonna make it. I wish you good luck.

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