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).

@contentandwell

@stephieisabella I am not familiar with gastroscopy, I did google it, but not sure from the results if this is like an endoscopy and more. I had an endoscopy which showed Barrett’s Esophagus. Is that possible for you?
You are young but my husband’s granddaughter went through similar at about the same age. She does have to take antacids before eating but seems to be doing well. I hope you are able to diagnose the problem and get some help with it.
JK

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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.

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@saucy

Fructose intolerance was my problem and it took years of meds and surgery to find that out. Everyone raves how good fruit is for you but about 30% of the population has an intolerance and is not aware of it. Try cutting out all fruit and related foods for a week. The relief was in about 1 1/2 days. It was amazing all the problems it was causing. Even a little bit for me causes major pain. I was tested for it at MAYO and it was negative but turns out the test aren’t always accurate. Please read my previous post on the subjects.

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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! 🙁

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@kanaazpereira

Thank you @danybegood1, @contentandwell, @kathyannyarborough for joining in with some great information.

Welcome to Connect, @stephieisabella,
Your perseverance to find relief from these health challenges, at such a young age, is so encouraging!
I’d also like to introduce you to some other members, and see if they have any suggestions from their experience with reflux; please meet @mwarenski, @hardclose, @lizann, @ptfitzy, @melrosedecosmo, @davearnatt, @saucy, @ladysky, @cathy615, @robbinr, @hardclose, @lizann, @rexanna, @boogirl, @danielad, @cbs61752, @dandl48, @cmaso.
You can read their discussions here:
Acid Reflux and its Symptoms..http://mayocl.in/2mcv8vh
“I have acid reflux so bad it is coming up into my sinuses” http://mayocl.in/2lm32B4

@stephieisabella, although gallstones are more common in adults over 40 years, they can appear in a person of any age, and research shows a rise in the diagnosis of gallbladder disease in people as young as teenagers. Have your doctors given you an explanation for not testing for gallbladder conditions?

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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 🙁

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@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.

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@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!

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@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!

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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!

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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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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?

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@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!

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@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.

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@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

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