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).

@robbinr

I have had recurrent GB issues for years, and every time I have a scan and a functional test -it shows all normal. But that doesn’t stop the pain from coming back over and over. I cannot convince my Dr. that I would be better off without the GB. I guess I’ll have to wait until it is a middle-of-the-night emergency to be taken seriously. My little sister’s GB was necrotic by the time it was removed.

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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.

@ladysky

You’re certainly not too young for it – a close friend had to have her gallblader removed after a pregnancy and she was in her mid 20s. Also regarding the charcoal tablets. You may find a little relief using them (I used them years ago) but beware that if you’re taking other meds, vitamins, or supplements around the same time as the charcoal, the charcoal can absorb them and send them out of your system. So you might not see as much benefit there. Just be sure you’re having regular blood tests to be sure all your vitamin levels remain normal. Good luck and hang in there!

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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!

@danybegood1

@stephieisabella, Hi. Wow, you’re only 22 and saddled with this illness already. It sounds like you are doing the right things already. Iam 65 and my illness started when i married my first husband at 20 lol. Not so funny at the time. I started having the most awful cramps in my stomach. Turns out i had what they called a spastic colon and a duodenal ulcer. At some time between 1972 and 1981 I was put on Zantac and Bentyl. The first times I took those pills and felt the relief of pain was magical. My stomach just felt kind of warm. Now i am on Protonix and i have had reflux disease for about 50 yrs. I still dont have Barrets esophagus for which i am truly grateful. But i do have gastroparesis, severe trouble
swallowing, and diabetes. I have a host of other problems not related to my stomach. So there.
Try looking here https://www.drugs.com/health/epi/need-to-know-2833/#2. This a link to drugs.com. Maybe you will recognize some of your symptoms and it will list some tests you need to take. Dont stop being your own advocate. You are the best friend you will ever have. Your future is ahead of you, not behind you. Try not to eat cooked tomatoes, onions, chili powder, VINEGAR, peppers, chocolate, carbonated drinks, peppermint. Chocolate and peppermint relax the esophageal sphincter and will allow acid to flow back up. Dont bend over unless you absolutely have to. I try to pick things up with my toes for crying out loud. Let someone else do it. I wish i had the answers but im still struggling. Keep going to the doctors. If you’re under a lot of stress try to get rid of some of it. Even good stress can be bad. Im not on the digestive problem forum. Im in mental health, haha. I hope you can find some relief and the answers to your digestive illness. Ill be thinking of you. And as always, if you want to vent or talk, im right here.
Love, Judy

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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).

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?

@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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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!

@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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“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.

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

@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!

@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.

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!

@stephieisabella how are you now? Are you better?

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.

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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