UNCONTROLLABLE BILE REFLUX!! PLEASE HELP!!

[JayFaith]

Hello.  I have recently been diagnosed with bile reflux.  I have SEVERE, CONSTANT burning in my stomach, abdomen, and chest area.  The bile is refluxing not only into my stomach but my esophagus.  It is so out of control that is has caused my esophagus to not open properly from the burning not being controlled.  And most of all it has caused tachycardia with my heart to the point that when the burning is at it's worst I get heartrates in the 180's.  It has been narrowed down that the bile reflux is causing my problems.  I have a constant fire raging in my stomach/chest/abdomen.  I was prescribed Questran and Welchol, both of which gave me severe heartburn and gas, which did not help because it just went from one type of burning to another.  The only thing that seems to even help a little is Carafate, but not that much.  The docs have told me that they don't know what other meds to try.  Can anyone who has had experience dealing with bile reflux please offer some suggestions as to how I can control this.  It has not been determined what the cause of the bile reflux is.  I have had many tests done (hida scan, mri with mrcp, blood work, egd) the only thing I haven't had done is a small bowel follow-thru, gastric emptying study, and a colonoscopy.  I am not sure what happened to my body.  Prior to having bile reflux I had acid reflux for over 20 years and after seeing a post that said "activia" yogurt cured my acid reflux I decided to try it and after the 14th day my body exploded with excess gas, rapid heartrate(198), and uncontrollable belching(up to 20 min at a time), and severe burning that has not let up for the past 2 1/2 months.  I don't want to leave this out because also during the 14 days that I ate activia I also went on a yeast/candida free diet and and sugar free diet and got 2 IV iron infusions for iron deficienty anemia.  Not sure if these things had anything to do with it but I was pretty much healthy before I embarked on this 14 day diet change.  Based on the testing apparently "activia" did cure my acid reflux because I no longer have acid reflux I now have alkaline/bile reflux.  I am currently typing this from the hospital.  During the last 2 1/2 months I have been hospitalized 8 times.  All docs are puzzled and can't seem to help me.  When I take any type of PPI, H2 blocker, or acid med even something as simple as tums or rolaids, the burning gets worse.  When I tell the docs that they don't believe me but I have found many articles and posts that say that when you have bile reflux these meds make it WORSE....how come the docs haven't read this info?  If anyone has any suggestions on how I can control this bile reflux thing please let me know.  I am very desperate and in misery.

Also, not sure why the bile reflux developed.  I did have abdominal surgery but that was to remove fibroids and they used the same scar as a previous c-section about 3 months prior to this happening.  I do have adhesions from the surgery but bowels flowing normally.  When I ate the "activia" yogurt I am lactose intolerant, I think, and could I have possibly caused an ulcer in my colon.  I read that ulcers there could cause bile reflux, but haven't had a colonoscopy yet.  

Right now I just really need a suggestion of what I can take to get out of this constant burning and pain and then I will continue my search for the cause.  

Please help if you can.

[Mbernrid]

How are you.
I like you have periods of being ok I am feeling very rough at moment, last attack was in January.
Need to find a way to eradicate this from my life it's impossible to function and the terrible burning in my side is horrendous

[paulx2]

I am so so worried about this. I have been struggling with my stomach for about 3 years now (I am only 39). I was massively overweight, lost 6 stones and was o so happy. The problems then seemed to start from nowhere.....nausea, pain, cramping, not emptying when I went to toilet and all this seemed to start after I had an umbilical hernia repair. Then I had a gallbladder attack and I had that removed and they said that would stop the pain and nausea...............it didn't.
Changes in diet make no difference although I must say when I eat less healthily I seem to feel better than when I stick to a diet like slimming world (high protein, less carb, lots of veg). I alos seem to feel better when I DO drink which is weird.
So it now seems that they say I have bile reflux and my problem is that I am worried about the long term and the links to cancer......or Barret's.....my Doc today said that it was not a problem but I have read otherwise. My daughter is only 6 and I love her so much and I want to be around for her for many years........I am now petriifed that this will devlop into something more serious eventually. I am going on to carafate tomorrow and mottilium (domperidone) does seem to help some of the time. Weirdly I do remember an 8 month period where I was totally symptom free but there didn't seem to be any reason for that, I can't put my finger on what was so different but I was so grateful everyday that I seemed to be cured. As I say I am starting the new meds tomorrow, I will post back to let you know if there is any improvement. Please post if you find a cure, also any advice on how I should be pressurising my Doc would be greatly appreciated...........I don't want to die too young :), good luck everyone

[nochocolate]

On dexilant now and not as much pain in stomach.  Had gallbladder removed 25 years ago. Had hpylori at one point, also have had adhesions removed that caused total bowell blockage.  But unlike others I have gained weight 15 pounds.  I quit smoking over a year ago thinking that was causing the hoarseness and cough.   Diagnosed with bile reflux four months ago.  Was told to lose weigh but I eat small portions and I am still gaining.  Spicy foods don't bother me nor does garlic or onions my triggers are coffee , chocolate, popcorn, pork, lunch meats and alcohol.  Leaving off the alcohol does not bother me. But giving up chocolate is horrible.  

[robertwithbilereflux]

Wow, I read your experiences, and I am amazed.  I thought I was sick!  I started having problems about two years ago.  I didn't have too much discomfort, but I had to be really careful when I was drinking.  I would cough and choke while drinking.  I had a number of choking spells when drinking coffee, and beer and wine.  Then, I really became sick twenty four seven.  It started on new years eve of 2013.  I lost my speaking voice, and I felt terrible, and I coughed constantly, and felt like I had to clear my throat all the time.  

It has taken a year and a half to be diagnosed with bile reflux.  Now I have some idea of what is happening.  As you all said, the acid blockers didn't help.  I have good days and bad days.  I can never figure out what causes the days to be good or bad.  It doesn't seem to correlate with anything I eat or drink or do.  

I had a bad day yesterday.  I constantly felt like I needed to clear my throat and I needed to cough, and my stomach bothered me.  I couldn't figure out whether I was hungry or too full.  The bile reflux gave me a bad taste in my mouth all day, and I had trouble talking.  It also makes me a little short tempered and makes me want to stay away from other people.  I don't even like to talk on the phone when my voice is bothering me.  

I use Carafate when the symptoms are occurring.  It helps.  

[dolphin005]

I don't understand what he means to do and I read it a few times. Stop all PPIs and just eat dry toast for 24 hours? Nothing other than toast and water? I am confused

[Katkak]

Excellent help I know you are the only person on the whole net who has helped me!  Thank you so much, maybe once I get around this whole business of finding what works I will too be able to help others get around this hellish state of being.  It's been a week since I've been diagnosed and I am half depressed and half all into finding the answers for myself.  I might be gluten intolerant too, so I've stayed away from gluten and am feeling better!  Little meals are helping but neverthelss I still have pain after eating but it's more bearable knowing that everyone with BRD suffers as I do, it's nice to have pain friends