1. < Digestive Health

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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 2, 2017

Hello @alina151,

I'd like to welcome you to Connect, and thank you for sharing your history, and all the information. I'm sure the members in this discussion appreciate it tremendously.

This discussion on SIBO might interest you, as well:
Small Intestine Bacteria Overgrowth: http://mayocl.in/2qwETYN

You may also wish to read these discussions taking place on Connect; feel free to tag other members, and ask questions:
Acid Reflux and its Symptoms: http://mayocl.in/2mk1Lre
I have acid reflux so bad it is coming up into my sinuses: http://mayocl.in/2lm32B4

@alina151, it's nice to know that you're being an advocate for your health; have you made significant changes to your diet also? Do you have any suggestions or tips for Connect members?

REPLY
Jacqueline E Koscheski | @jacquelinek1956 | Jun 21, 2017
In reply to @alina151 "Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal..." + (show)
@alina151

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).

Jump to this post

Talking about VSL#3, is that the actual name or kind of probiotic? My gastro's PA said Align was the best, but I am not sure about that. She had no proof. I have had two bouts of SIBO since January. EVERYTHING I eat seems to either cause gas, upset stomach, bloating or with luck sometimes I get it right and nothing happens. I am "trying" to follow the FODMAP diet, but with my reflux, there is so much I can't eat on the list. I am so tired of this whole thing. I feel like my doctors just don't really care to help me. Please list what VSL#3 are and what names they are sold as. Thanks!

REPLY
Jacqueline E Koscheski | @jacquelinek1956 | Jun 21, 2017
In reply to @alina151 "Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal..." + (show)
@alina151

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).

Jump to this post

"Ask a doctor, pharmacist, or other healthcare provider if it is safe for you to use this product if you have:

milk allergy or lactose intolerance; or
if you are taking an antibiotic medication."

I am lactose intolerant.

REPLY
JK | @contentandwell | Jun 21, 2017
In reply to @alina151 "Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal..." + (show)
@alina151

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).

Jump to this post

@jacquelinek1956 I can understand your frustration too well. I hope you get some better attitude from your medical care takers.
JK

REPLY
ladysky | @ladysky | Jun 21, 2017
In reply to @alina151 "Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal..." + (show)
@alina151

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).

Jump to this post

I used Align for a few years and I think it helped. However, at the recommendation of my Fibromyalgia specialist (who informed me that IBS often dovetails with Fibromyalgia) I'm now taking acidopholus 3x/daily. I use a nondairy (even tho I'm not lactose intolerant) with a high (1 billion) count. It hasn't 'cured' the IBS, of course, but I think it really helps smooth things out a lot. I don't seem to have as many bouts of it either. Hang in there!

REPLY
ladysky | @ladysky | Jun 21, 2017
In reply to @mrsdeecee "Have you seen a GI doc??" + (show)
@mrsdeecee

Have you seen a GI doc??

Jump to this post

I didn't see where you mentioned whether you'd had an endoscopy and colonoscopy. If not, these are a must to see if there's anything else going on there. Hiatal hernia could be causing your pain too or some ulceration in your GI tract. I say this from experience. If you take NSAIDS, stop, as they can cause ulceration. Tylenol better if you have those problems.

REPLY
robbinr | @robbinr | Jun 23, 2017

Recently, someone wrote in about having bloating and gas even if she consumed only water. This make me remember that my whole family was suffering with these, and despite filtering our drinking water, we found that our water supply was contaminated with cryptosporin(spelling?) and a few other bacteria that cause gut upset. I had a whole-house water filter installed and we all got much better!

REPLY
melonelily | @melonelily | Nov 19, 2018

@stephieisabella how are you now? Are you better?

REPLY
cherstue | @cherstue | Nov 22, 2018

Your journey sounds very familiar. I (and my docs) have no answers, just want to ask if after eating (or even drinking a full glass of water) you ever get a tight "band" feeling just under your ribs? Everything else you mentioned -- symptoms, tests, results (signs of inflammation, no ulcer, etc.) -- are identical. In my case, my gall bladder was removed several years ago "to prevent future problems" (long story, was no actual need). A couple years ago, got unbearable pain in back and the "band tightening" just under my ribs, was evaluated for cardiac trouble in ER (no problem, ER doc called GI doc and made an immediate referral). GI found a gallstone in bile duct; it was removed. No change in anything other than the back pain. I've tried everything you have, religiously. Elimination diet, to id troublesome foods - elimination of troublesome foods and various eating plans that were supposed to make a difference but didn't; no change. Would consider bile reflux, but not losing weight, even on restricted calorie and other eating plans. A general diagnosis of "IBS" has led up several paths of lifestyle/food changes, but still have the same essential symptoms. All of this is worth saying only to validate your experience - no practical advice for how to diagnose or treat or recover to offer. It's painful, anxiety-provoking, daily life-limiting, and mysterious. I'm guessing that there have to have been some people, somewhere, who have had this diagnosed and treated. Maybe they've stopped reading these kinds of blogs afterward and got on with their lives. But I keep hoping that you or your doctors, or mine, or someone's, will recognize the symptoms and point us in the right direction for relief.

REPLY
strode | @strode | Nov 23, 2018

This is such a sad list. Have you tried Baclofen? Worked for me. I started with 10 mg and ten years later Iʻm at 30mg, once a day around 7 or 8pm or youʻll wake up groggy next AM. Doesnʻt seem to have that effect if you take it ion the morning, but my symptoms only kick in at night. Itʻs a muscle relaxant, which makes me think my bile reflux has to do with stress, anxiety, unresolved emotional issues etc. Good luck! Simon

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