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).

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.

Liked by konniehoover

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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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I would go to the Mayo clinic to get properly diagnosed. They are #1 in gastroenterology. I suffered for over 10 years with undiagnosed fructose malabsorption and small intestinal bacterial overgrowth; also lactose intolerance, which I knew I had.

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Hello,
some time ago I wrote a comment about my abdomen pain and bile reflux.
For one month I got Ursofalk 500 mg before night and after that I started to eat soups, semolina porridges. I still got a little bit pain after meals but then there was 2 days where I accidentally didnt have much time to eat at all ( for breakfast little bread and than only at 16 PM I had one small bowl of soup).

So weirdest part- after two days of eating almost nothing, my pain went away. It felt that not eating at all for some time helped.

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@cwhitwell

Is there anyone that has been diagnosed with Bile Reflux and what are you doing to get rid of it?

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Have you found something that helped? I was prescribed bile binders and protonix.

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@stephieisabella, I hope you're doing better. Can I get an update on how you're doing, any new discoveries you've made and any additional insights you may have? My issues, tests and attempts to find an answer are fantastically similar to yours (except they DID take my gallbladder, 19% HIDA). Thanks!

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@mco1989

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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mco1989, Are you saying you had the ERCP? What was the outcome?

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What led them to Dx bile reflux if I may ask? You said that your endoscopy was normal which is why I ask. I posted a new topic an hour ago where my EUS noted bilious fluid in the stomach and thickening of the stomach mucosa. Have any of your doctors mentioned roux en Y surgery where they route the bile duct to the small intestine and not the stomach? I know that seems to be a last resort for those who don't find relief with diet modifications or medications. I am 5 years post GB surgery and dealing with this. I plan to ask more about this GI surgery next week at my appointment. Living like this for the next 25 years seems really depressing.

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@bborth

Just curious on some feedback from anyone who has had this procedure for said malady. I have almost exhausted the options of medical treatments here with the exception of the powder medication which binds bile salts and such. EUS showed bilious fluid throughout the entire stomach, and something called gastropophy? Have dealt with issues ever since my gallbladder removal back in 14, but now it is worse than ever for some reason. Please respond if you have had this done, and ow you arrived at that decision. Thanks!!

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Hi @bborth that must be frustrating finding no successful treatments for your bile reflux.

I am hoping @judipogo will return to share her experience with this surgery.

I also wanted to introduce @rosemarya who has had a roux procedure, though not the Roux En Y, and she may be able to share her experience.

Back to you @bborth, is this surgery something your doctor is suggesting?

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@bborth

Just curious on some feedback from anyone who has had this procedure for said malady. I have almost exhausted the options of medical treatments here with the exception of the powder medication which binds bile salts and such. EUS showed bilious fluid throughout the entire stomach, and something called gastropophy? Have dealt with issues ever since my gallbladder removal back in 14, but now it is worse than ever for some reason. Please respond if you have had this done, and ow you arrived at that decision. Thanks!!

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Thanks Ethan, it would be good to connect with others who have had this surgery performed. My meeting this coming Friday with the GI surgeon is to see what he thinks about my situation, and how surgery may benefit me. I guess I am not sure what could possible make this better other than Questron (power medication I mentioned earlier) as it is the only medication I have yet to try. I need to nail down the diagnosis of course, but the one red flag so far is the bile that was seen in the "entire stomach area" and this inflammed stomach mucosa. Not sure outside of bile reflux what this could be as we are eliminating things like gastroperesis and such. Just feels so acidic inside me. To accept how I am feeling now for the long term won't work for me…..too much reduction in quality of life plus being on so many medications can't be good long term. What a journey.

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@bborth

Just curious on some feedback from anyone who has had this procedure for said malady. I have almost exhausted the options of medical treatments here with the exception of the powder medication which binds bile salts and such. EUS showed bilious fluid throughout the entire stomach, and something called gastropophy? Have dealt with issues ever since my gallbladder removal back in 14, but now it is worse than ever for some reason. Please respond if you have had this done, and ow you arrived at that decision. Thanks!!

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@bborth
I have had a roux en y “with a twist”. … just means it was a little different than the normal one, I do not know how it is different. Mine was to fix a paraesophageal (sliding) hernia. The reflux that came from the hernia .. which kept pulling my stomach into my chest.. did a lot of damage. I had some complications with the surgery… not the surgeon's fault; just my body. My esophagus shortened and caused a leak.. 1% chance of that happening. It also pulled one loop of my intestines into my chest. I was too weak to have more surgery then and left the hospital with a feeding tube. About 6 months later 2 more loops pulled up into my chest and pushed my left lung against my ribs. I had to have another surgery to repair this.. very high risk, but less than the risk of not having it. It had to be an open surgery and because of the cut they had to do a long recovery.. This surgery was in 2015 and I am in still a lot of pain. I stayed on the feeding tube for 5 more months after the last surgery.. a little over a year from when it was first put in.

Please do not let my experience dissuade you from the surgery. Mine is just an odd-ball case. Weigh all the information and do not hesitate to get second or third opinions.

Best of luck,
Zaroga

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