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).

@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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Thank you so much for sharing. So….if you had to do it over again, would you? I plan to have my GP recommend another GI surgeon so I can have consultations with 2 such surgeons. From what I have read, the surgery for bile reflux is less complicated than that for weight loss per se. Basically rerouting the bile duct from the stomach to the small intestine. At this point if the surgery can get me 50% better without too many risky complications I'll take it.

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@bborth

Thank you so much for sharing. So….if you had to do it over again, would you? I plan to have my GP recommend another GI surgeon so I can have consultations with 2 such surgeons. From what I have read, the surgery for bile reflux is less complicated than that for weight loss per se. Basically rerouting the bile duct from the stomach to the small intestine. At this point if the surgery can get me 50% better without too many risky complications I'll take it.

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@bborth
I pretty much had no option, but to try the bypass. I had nissen fundoplication wrap surgery in 2001… almost immediate failure. In 2007 I had a repair of it and the surgeon (different than first.. first had retired) used mesh in an area he should not have. I complained and complained of pain and he had the god syndrome of none of his surgeries ever fail. I put up with the pain until 2012 when I started losing a lot of weight, had lots of nausea and vomiting, and more pain. My gastro doctor ran test and said you need to see a surgeon.. the hernia is bringing your stomach into your chest again. I went to a different surgeon and he had one more test he wanted me to have done. At my next visit with him he said that I needed surgery, but he would not do it. He wanted me to go to the Mayo Clinic in Jacksonville Fl because they are experts at fixing other surgeon's mistakes. My first surgery at Mayo was an undo and repair of hernia. I lost the upper portion of my fundus, so no redo of the wrap. The fix of the hernia immediately failed.. that was 2013. In 2014 I saw a different surgeon at the Mayo .. the first was on sabbatical. Dr Bowers said it just did not make sense to use the traditional method of repair again when it has failed. He told me my options and I researched what he said. I agreed with his reasoning. One reason was that the bypass surgery was created to repair such hernias and weight loss was just a side effect. So yes I would do it again even though I had complications. Oh I cannot remember all the side effects of the surgery. I can only remember one can be more susceptible to pancreatitis. I have not had it so far. I eat soft, tender foods. Only raw thing I eat is ripe bananas. Mainly because I have achalasia. .. difficulty swallowing. The acid really did a number on my esophagus.

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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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Just trying to prepare for my appointment tomorrow with this GI surgeon. Seems like I have run the list of medications to take, metoclopramide being the only one that has helped a bit. Of course you can't take this long term, so this isn't a plan for the future. Carafate seems to help the pain in the chest, but nothing else. Plus make me really spaced out and off balance. So…..getting to the point where I need to try something to gain some quality of life back, and symptom relief to some degree. Not sure how surgeons look at that, but my not being able to work much longer in a career I love (engineer) or do things I enjoy isn't a way to look at the future. One more question…..whenever I compress my abdomen (bending over/twisting the torso a lot) really aggrevates my symptoms, especially in the area my GB used to sit. Any idea what is going on? Could I be moving the bile in my stomach around more? Just feels so acidic down there.

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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 am sorry I did not read your last post until today. A rough few days with my 91 year old mama.

I hope all went well with your appointment. So many gastro conditions have the same symptoms and a gamut of test and experienced doctors is the only way to find out what is going on,

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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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No kidding. I am down to one more test this week…..injecting something into me to see how the bile flows. I had the bravo test last week with the monitor and such for the PH level indicator. I will go over that and this next test this coming Friday when I meet again with my GI surgeon. Given my history, and my lack of any real success with medications he is leaning towards surgery. 2 endoscopic procedures a month apart both show too much bile pooling in the stomach, and the related mucosa thickening/inflammation. I will get a more detailed explanation this Friday, and most likely a date for this surgery. Bascially putting a drain in at the bottom of the stomach to get this bile out quicker. All my symptoms certainly seem to relate to bile being the culprit. After 5 years of dealing with this to varying degrees I am ready to take this step……status quo isn't acceptable for me at 55 years old and a lot of life left to live.

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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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I go next week for more testing. So far just a swallow test and endoscopy and doctor visit. It was suppose to be over two days.. now it is 3 days. The doctor who was to do the endoscopy had an emergency. I have achalasia and Barrett's esophagus. I doubt the latter is any better the way I feel. I have other stomach problems too. I am having more stomach and chest pain.. sphincter going into stomach does not always open and food and water will not go down when that happens. Three times within the last two months I thought I would have to go to ER.. that would mean an airlift to Jacksonville. It is about a 5 hour trip by car to Mayo in Jacksonville.

I wish you the best and please update me when you find out anything.

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@fourof5zs

I go next week for more testing. So far just a swallow test and endoscopy and doctor visit. It was suppose to be over two days.. now it is 3 days. The doctor who was to do the endoscopy had an emergency. I have achalasia and Barrett's esophagus. I doubt the latter is any better the way I feel. I have other stomach problems too. I am having more stomach and chest pain.. sphincter going into stomach does not always open and food and water will not go down when that happens. Three times within the last two months I thought I would have to go to ER.. that would mean an airlift to Jacksonville. It is about a 5 hour trip by car to Mayo in Jacksonville.

I wish you the best and please update me when you find out anything.

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I certainly will, and you do the same. I am counting the hours until my appointment on Friday. Feel like I am at deaths door at this point, so will push for a surgery date sooner than later. Fun stuff.

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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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I had a gastroectomy (80%) with the roux en y but mine was for severe acid reflux. I was getting stomach acid into my lungs. I am 6 weeks out of surgery and getting better every day. I had a Nissen fundoplication surgery 2 years ago that did more harm than good. I was told having the roux en y there's a slight chance of getting bile reflux so I'm not sure how in your case it would stop it. You're opening up a straight shot from your intestines to your stomach. I would get another opinion. Do your homework and search for a doctor that specializes in digestive surgery. Good luck.

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

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I will try to be brief here, but really looking for comments from anyone who has been dx'd with bile reflux. I am a 55 yr old male how had my GB taken out 5 years ago. Since then I have had periodic problems in that area with many symptoms mentioned here. Have had stents placed/removed from the sphincter of oddi many times, but this is just a temporary fix. When things turned on me 4 months ago (stents in) I had them replaced with no relief. Sought a new GI doctor who had them removed again saying this isn't the problem. I had a endoscopic ultrasound performed, and this noted bilious fluid in the stomach and something called gastropothy? CT scan showed stool back up (even though I go 1-2 times/day). Gastric emptying study normal to rule out gastroperesis. Pain in the R side of the stomach (burning/acidic sensation), pain in the chest area, R side, swollen feeling same area. Only thing that has helped is a combination of Protonix and Metroclopramide. I just can't believe having bile in the stomach is alright in the long run. So…..is bile even supposed to be in the stomach? I know acid is, but this bile observation in the EUS really correlates with the stinging/burning sensation I have literally 24/7. And…if I do any activity requiring me to bend over much I get really sick. Curious what that is all about. Comments?

REPLY

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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@claytamos

I had a gastroectomy (80%) with the roux en y but mine was for severe acid reflux. I was getting stomach acid into my lungs. I am 6 weeks out of surgery and getting better every day. I had a Nissen fundoplication surgery 2 years ago that did more harm than good. I was told having the roux en y there's a slight chance of getting bile reflux so I'm not sure how in your case it would stop it. You're opening up a straight shot from your intestines to your stomach. I would get another opinion. Do your homework and search for a doctor that specializes in digestive surgery. Good luck.

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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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@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. Vincent Chang at Rochester General in Rochester, NY

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