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stephieisabella
@stephieisabella

Posts: 9
Joined: Mar 10, 2017

Relentless bile reflux / pain

Posted by @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).

REPLY

I am in pain for you as I remember this saga well. (First, I'd suggest you look up Pancreatic insufficiency because your yellowish stools and location of pain could match that diagnoses). What worked for me is to first, treat the stress best you can, using meds if need be. Then, try to identify foods you have trouble handling and avoid them. I also took digestive enzymes with meals.I suspect food intolerance to be at the root of this, so be a detective. It could be lactose, could be wheat or grain, cold be gluten, you need to find out. Probiotics either pill or yogurt can also help. In fact in my case were the thing that helped the most. Hope you feel better.

@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

@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

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?

Liked by hekele

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.

@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.

Jump to this post

I came across this article. I don’t know if it would be helpful.
Phil
http://reference.medscape.com/viewarticle/867089?src=wnl_edit_tpal&uac=202198MY

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!

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.

Liked by Deena

Have you seen a GI doc??

Yes to reflux and gluten sensitivity. Maybe I should be grateful for the intermittent pain; I know I am alive anyway:}

@mrsdeecee

Have you seen a GI doc??

Jump to this post

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 🙁

@kathyannyarborough

I am in pain for you as I remember this saga well. (First, I'd suggest you look up Pancreatic insufficiency because your yellowish stools and location of pain could match that diagnoses). What worked for me is to first, treat the stress best you can, using meds if need be. Then, try to identify foods you have trouble handling and avoid them. I also took digestive enzymes with meals.I suspect food intolerance to be at the root of this, so be a detective. It could be lactose, could be wheat or grain, cold be gluten, you need to find out. Probiotics either pill or yogurt can also help. In fact in my case were the thing that helped the most. Hope you feel better.

Jump to this post

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.

@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

Jump to this post

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.

@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.

Jump to this post

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! 🙁

@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?

Jump to this post

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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