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.

@michelle34

What other symptoms are you having? I also have an acid taste in my mouth almost all the time. My endoscopy came back normal. I’m experiencing acid/pepsin that is going to my ears and throat which is effecting my voice. Also, the acid/pepsin is going to my lungs which is causing asthma symptoms. I’m on 40 mg of nexium 2x a day but it is not working.

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Before my surgery I always had bad taste (and breath) and would choke all the time until I would gag. I had a horse voice and when Mayo did the Bravo study on me I had severe acid reflux. Did they do the Bravo capsule? I had been meds twice a day with no help. These meds are very bad for our health as they are now finding out and when you try to get off of them they cause a rebound which is worse then the reflux. It takes 6 weeks to get off them. After having the LYNX surgery I still had bad reflux and had to take meds until I weaned off them and changed my diet.

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@cornflower

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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DGL is a form of licorice that has the ingredient that raises blood pressure removed. However, hawthorn berry does seem to work on mild causes of HBP from what I've read. (It works for me.) However, hawthorn berry is a good detoxer so be careful if you're taking other medication.

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@saucy

I cut out fruits over 2 years ago! I loved them! Some vegetables that were really fruit like peppers and cucumbers really anything with seed, I cut out over a year ago but started carnivore about 6 weeks ago and don't have that gas and blasting after eating. As a side note I don't eat any carbs including breads, pasta, cereals ect. It's a great sacrifice but when I start feeling better it's worth it. When I cheat I pay the price for several days but it takes till the next day before I feel the effect. You can go online and see the carnivore diet or go to Dr Wolfson's website he talks about it.

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@saucy your diet sounds like Keto. If you have cut out fruits and vegetables do you eat only meat, and nothing else?

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I pretty much have gone to carnivore diet. I eat a few vegetables that don't bother me as much but I do supplement.

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I ended up having Roux en y surgery for my bile reflux fall of 2019. I had most of what you described including vomiting of bile towards the point of having surgery. I was told that this would then start eroding the esophagus lining, so really had no choice. But.....it has not been a cure. The antibiotics I took afterwards took out all my gut bacteria, which then caused SIBO. That took 2 months to get over which was a year ago. Then, 10 months of what I consider being back to normal, then things started up again. Dyspepsia now, since I have had my GB removed as well as this surgery which somehow has messed up the motility in my system. This past 2 months has been tough again, and I plan on posting here on that topic. So frustrating, just never seem to get clear of these issues. But again, surgery was the only option for me with my bile reflux. You may want to meet with a surgeon on this, I know some people who benefited a lot from this and didn't have ongoing issues like I've had.

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@julipuli

Could you tell us who was your surgeon and what hospital he works out of? So glad you are feeling better!

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Dr. Greg Bielman, Univ MN

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@michelle34

What other symptoms are you having? I also have an acid taste in my mouth almost all the time. My endoscopy came back normal. I’m experiencing acid/pepsin that is going to my ears and throat which is effecting my voice. Also, the acid/pepsin is going to my lungs which is causing asthma symptoms. I’m on 40 mg of nexium 2x a day but it is not working.

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I am out 8 years from having a Sleeve. I Have had 3 endoscopes over the past 3 years due to severe restriction with foods and swallowing. I have severe stage 4 esophagitis and bile acid in my pouch. I take Dexilant which stops the burning. I also have a hiatal hernia. I have a stricture in my esophagus as well which has been stretched during the endoscopes. I still suffer from nausea, vomiting and regertation of foods. I gained 52 lbs back after losing 95, I do understand that the weight gain may or may not have contributed to my current health status. I have made dietary changes and I have lost 18 lbs. So that is good. I have counseled with my primary Dr. and then with my local gastrologist. Both recommended me to the Mayo Clinic to meet with a Bariatric Dr. After meeting with Dr. Madura at the Phoenix clinic. I am proceeding with a revision surgery to a gastric bypass. I read those of you who have continued to have gastric issues after a revision surgery. I would like you to share your stories with me. My surgery is coming up soon. The Dexilant controls the acid burn but regurgitation continues to be an issue . I am really concerned about this decision and would like to hear from those of you who have successfully converted to the gastric bypass

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Wow, my heart goes out to you. I am having major problems s/p surgery for para esophageal hiatal hernia repair (. Open). It was 3 years ago, symptoms never went away and got progressively worse. My primary ordered a barium swallow in March of 2021 which revealed a slipped Nissen and a new hiatal hernia. I am 76. I have for a surgeon who is willing to try a redo surgery , but after reading so much I wonder if it would be worth going through all of the complications it could bring me. You are so young, I hope you find some answers to your problems.

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I had all the tests at Mayo you had, and nobody told me I had Crohn's Disease. Yeap, they thought I was fat and that I had IBS-D when in reality I had an autoimmune disease. I had MRIs and CTs and 3 admissions for bowel obstructions, and nobody thought I had Crohn's. I would have you go to at a University Medical Center, which basically said we think you have Crohn's because all your scans show obstructions and inflammation that isn't going away. They said: no, we don't think it's in your head because the scans don't look normal. It took a lovely intake PA in the gastro dept that took pity on me at a University Medical Center (U of MN) who helped me out. Now I had the same pain you talk about and it's from bile reflux from having my gallbladder taken out. I'm taking Welchol (works great but it's very constipating), chamomile tea (awesome) and I'm going to do a trial of Carafate to coat my stomach. In the meantime, I'm doing slippery elm, marshmallow root, omeprazole, no fiber because I have strictures but recently started a tablespoon of chia seeds (again for coating the stomach) and some Miralax to keep up with the constipation. I lost 20 pounds after all this started (involuntary) and now another 20 pounds from trying 2 X 8 weeks of exclusive enteral nutrition that worked really well also and helped with the inflammation. I use the chronometer app to track all the nutrients. I also take colostrum and l-glutamine and milk thistle for liver health.

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@sharonrider

I am out 8 years from having a Sleeve. I Have had 3 endoscopes over the past 3 years due to severe restriction with foods and swallowing. I have severe stage 4 esophagitis and bile acid in my pouch. I take Dexilant which stops the burning. I also have a hiatal hernia. I have a stricture in my esophagus as well which has been stretched during the endoscopes. I still suffer from nausea, vomiting and regertation of foods. I gained 52 lbs back after losing 95, I do understand that the weight gain may or may not have contributed to my current health status. I have made dietary changes and I have lost 18 lbs. So that is good. I have counseled with my primary Dr. and then with my local gastrologist. Both recommended me to the Mayo Clinic to meet with a Bariatric Dr. After meeting with Dr. Madura at the Phoenix clinic. I am proceeding with a revision surgery to a gastric bypass. I read those of you who have continued to have gastric issues after a revision surgery. I would like you to share your stories with me. My surgery is coming up soon. The Dexilant controls the acid burn but regurgitation continues to be an issue . I am really concerned about this decision and would like to hear from those of you who have successfully converted to the gastric bypass

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There is a great book about this lady who have gastric bypass and she goes into detail on how she deals with her gastric bypass and issues with regurgitation and other things. She is an inspiration and a great resource for recipes and foods that are tolerated well: Before and after by Susan Marie Leach.

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