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Relentless bile reflux / pain
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).
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Hi there, thank you so much for replying. The pain is just under my right rib cage and sometimes a little lower just to the right of my belly button. I have seen two GI doctors now (got a second opinion) and both keep saying IBS and bile reflux. Been told there is not much more they can do for me at this stage 🙁
Hi there, thank you for replying, I had a fecal elastase which looks for undigested fat in the stool if the pancreas isn't doing its job and I was told that it all looked normal. I cut out both gluten and dairy for months (gluten for a year!) but no difference there. Also taking probiotics and digestive enzymes. It's crazy as I feel I'm doing everything right with no relief.
Hi JK, thank you for replying. A gastroscopy goes that bit further than an endoscopy so it also looks in the stomach and duodenum as well as the throat in general. I'm waiting for biopsy results hoping that all this reflux has not led to Barrett's already - fingers crossed.
Hiya, I read about this a little while ago as some of my symptoms matched up. I cut out fruit for around 3 weeks including anything with fruit extracts but no relief! 🙁
Hi there, I have been given a few ultrasounds now and an MRCP to look for gallstones. I was also given a HIDA scan which showed that my gallbladder is a little bit on the higher end of the EF scale but they said that my gallbladder will not be coming out 🙁
oh my goodness you are my twin! the doctor has said the exact same to me. All I think now is that I'll need to be on the floor unable to move until they will actually consider removing it.
Thank you for the advice re charcoal. I'm not finding much relief from it at all really which is a shame. I had high hopes!
Hi Judy, thank you so much for your reply. I've definitely cut out all of those foods - tomatoes were a killer for me when this all started over 2 years ago so that was the first thing to go. Thank goodness you don't have Barrett's, I'm so worried that my relentless reflux wil lead to this. I thought about a duodenal ulcer but they had a look with a camera during my recent gastroscopy. Thank you for the link about the pancreas issue. I had a stool test for this to check for undigested fats which can indicate a pancreatic issue and it came back clear. Very frustrating! On paper, I am very healthy but in reality I feel awful!
Two suggestions:
*Demand to be tested for SIBO (small intestinal bacterial overgrowth). It can cause all sorts of IBS and reflux issues.
*There is something called a hyperkinetic gallbladder. Look up Hyperkinetic Gallbladder Toronto, Canada 2009. I had a chronically inflamed gallbladder that didn't show up on imaging. My hida scan before gallbladder removal surgery 96% ejection fracture with bile reflux. My hida scan only 6 months before that was 75%. I showed my GI doctor the hyperkinetic gallbladder article since I was having gallbladder attacks daily and throwing bile. He sent me to a surgeon even though he didn't think it could be my gallbladder. Surgeon thought I was very much having gallbladder symptoms and agreed to surgery since everything else had been ruled out. Also, hida scans set off my pain. My gallbladder ended up being scared up, red and inflamed, and thickening of my gallbladder wall. None of which showed up on ultrasounds which the surgeon said isn't uncommon. Pathology showed chronic inflammation of the gallbladder. It most definitely needed to come out, so glad it didn't end up infected. I am still having some bile reflux 3 weeks post op but not like before surgery.
*Maybe request another hida scan if it's been a while.
*Find a better GI doctor! Good luck!
Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal bacterial overgrowth) in check. It's worked better than antibiotics and Costco pharmacy carries them for a little cheaper. Some people have GI issues subside with strong probiotics like VSL#3. Lower count probiotics, especially with prebiotics like FOS, MOS, INULIN, CHICORY, etc, can actually make some people worse off. If one is prone to SIBO, which I tested positive for and am prone to due to having slow motility, basic probiotics make it worse. They have to be strong enough and not contain prebiotics or they just feed my overgrowth instead of get rid of it. I took 2 capsules of VSL #3 for a month and now only one capsule daily or every other day. Taking only 1 capsule a day max makes the bottle last 2 months for me, which is only $24 a month. If you try a potent probiotic like VSL #3 or one similar, and it helps, you probably have an overgrowth like SIBO. It's a better a option than repeated antibiotics to treat SIBO. Mine kept coming back either way because of my motility disorder, which is blamed on my connective tissue disease EDS. So my GI doc just put me on VSL#3 instead and it works well. They don't require a prescription. Natural food stores also carry potent refrigerated probiotics. You just want to look for at least 50 billion count, preferably 100 billion count, with more than a few strains of bacteria (8-10 strains of bacteria is really good).