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).

@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).

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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!

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@mrsdeecee

Have you seen a GI doc??

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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.

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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!

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@stephieisabella how are you now? Are you better?

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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.

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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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Hello, Simon, @cherstue and @melonelily. Welcome to Mayo Clinic Connect. Thank you for sharing your experiences. I've seen firsthand what this can do to someone's lifestyle and it's awful. My heart goes out to you. Have any of you tried yoga or tai chi to help relieve symptoms? I haven't, I'm just wondering if it would be helpful or if anyone has tried it.

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I practice Tai Chi (at home) and relaxation yoga (with a group). Both help with overall mindfulness, muscle relaxation and flexibility, and balance, but do not seem to affect the GI symptoms directly. Probably they do have some physical effect on the functioning of internal systems, but symptoms haven't been notably eased by this practice (compared symptoms during with periods when I didn't practice regularly). Great question :).

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I recently got my diagnose – bile reflux. It is about 3 months now. And it started from nowhere – I havent had any surgery, USG shows everything is clear. First, I started to use Allochol, that didnt help me a lot. Now I am using Ursofalk before night – it helps trough the nigh, but next day after lunch I usually start to feel pain again.
I dont know what to do 🙁 I have read a lot and I start to think thatpain will not go away till the end of life.

Tomorrow I will try to eat only semolina porridge, because after I eat it in breakfast, I dont feel pain till lunch.

I hope there is something we can do about it:(

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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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I was overwhelmed reading everything you are going through and have tried. Most of what you’re dealing with I cannot comment on, but regarding acid reflex, just started making a tea by combining 1 to 1 Hawthorn and licorice (each is available in organic tea bags) I understand licorice can help rebuild the stomach coating, but raises blood pressure, while hawthorn brings down inflamation and lowers blood pressure, so by combining you get what is good and cancel what is bad. Recommended by an asian practitioner who is also an MD, so I thought it would be worth a try. As I say, I am just starting it.

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I wonder as I read the list of what you have tried to add or restrict to you diet, have you tried eating vegan?

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