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UNCONTROLLABLE BILE REFLUX!! PLEASE HELP!!

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.
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Avatar universal
You need to see another dr.
University of Utah Gastroenterologist Dr. Adler, If you are on the east coast, Dr. Bolt, he is the dr. they made the series, House after. Dr. Bolt is the complete opposite of Dr. House. You can find him online.
Seattle Washington has a reasearch hospital my sister sees for her bile duct surgeries.
Stop listening to doctors like they are intelligent, intelligence comes with specialists..keep looking.
https://www.cancertherapyadvisor.com/gastroenterology-hematology/sphincter-of-oddi-dysfunction/article/596592/
This talks about bile reflux and SOD, bile spasms
Helpful - 0
Avatar universal
What a great and inspiring story! I was married for seven years without any child, because of this my husband start acting strange, coming home lately and not spending time with me any more and  he divorced me. So i became very sad and lost in life because my doctor told me there is no way for me to get pregnant this really make life miserable for me. until i came across a friend who told me about Baba Alika from the Internet, how he has helped a lot of women with this similar problems that i am going through so i contacted him on: (***@****) and explained to him. he told me all what to provide before he could cast a reunite spell to bring back my husband which i did  and he sent a powerful prayer which i had to say at mid night while he cast the love spell. It was a miracle, 24 hours later my one and only husband came back to me and apologize for all he has done and told me he is fully ready to support me in any thing i want,i quickly call Baba Alika and told him what was going on at that moment and he also prepared and sent me a herbal medicine which he said it will cure every unwanted diseases or  infections that has been stopping me from conceiving then instructed me on how to use it before meeting with my husband. Behold after using this native herbs and root, few weeks later i started feeling pregnancy signs all over me, truly i was pregnant i just gave birth to twins (boys) on the 1st of this month. I Vow to let the whole world know about Baba Alika for saving my relationship and for also giving me children i can proudly call my own today. For any woman who think it impossible, here is an opportunity for you to smile and bring happiness to your family kindly contact Baba Alika via Email on: (***@****). Indeed, he is a God sent to bring back lost lovers and bring you happiness...
Helpful - 0
Avatar universal
What a great and inspiring story! I was married for seven years without any child, because of this my husband start acting strange, coming home lately and not spending time with me any more and  he divorced me. So i became very sad and lost in life because my doctor told me there is no way for me to get pregnant this really make life miserable for me. until i came across a friend who told me about Baba Alika from the Internet, how he has helped a lot of women with this similar problems that i am going through so i contacted him on: (***@****) and explained to him. he told me all what to provide before he could cast a reunite spell to bring back my husband which i did  and he sent a powerful prayer which i had to say at mid night while he cast the love spell. It was a miracle, 24 hours later my one and only husband came back to me and apologize for all he has done and told me he is fully ready to support me in any thing i want,i quickly call Baba Alika and told him what was going on at that moment and he also prepared and sent me a herbal medicine which he said it will cure every unwanted diseases or  infections that has been stopping me from conceiving then instructed me on how to use it before meeting with my husband. Behold after using this native herbs and root, few weeks later i started feeling pregnancy signs all over me, truly i was pregnant i just gave birth to twins (boys) on the 1st of this month. I Vow to let the whole world know about Baba Alika for saving my relationship and for also giving me children i can proudly call my own today. For any woman who think it impossible, here is an opportunity for you to smile and bring happiness to your family kindly contact Baba Alika via Email on: (***@****). Indeed, he is a God sent to bring back lost lovers and bring you happiness...
Helpful - 0
Avatar universal
Are you sure you have bile reflux? Bile in the stomach can be normal during endoscopy. It may not be bile reflux, may be irritable esophagus due to stress. I am not sure AT ALL. Ask your doctor.
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Avatar universal
Are you sure you have bile reflux? Bile in the stomach can be normal during endoscopy. It may not be bile reflux, may be irritable esophagus due to stress. I am not sure AT ALL. Ask your doctor.
Helpful - 0
Avatar universal
I was able to relieve my bile gastritis with liver cleanse.
I got bile gastritis after overuse of PPI, originally prescribed for peptic ulcer. PPI cured the ulcer, but resulted in bile gastritis. I was having bile in my stomach every night. It caused me a lot of sleep deprivation. I was waking up and spitting out yellow, bitter fluid.
Liver cleanse helped relieve my bile gastritis. I used Renew Life's Liver cleanse capsules. After 2 weeks, there was significant improvement. Now, I have bile gastritis in the night, only if I eat certain foods that irritate my GI tract - such as wheat(gluten), or fatty foods like oil, butter.
For the liver cleanse therapy to be effective, follow all the instructions provided. Drink a lot of water, and make sure to exercise. Both sweat and urine cleanse the body. Include more fiber in your diet, fiber absorbs toxins emitted by the liver and gets it out of your body when you poop! The first 3 days of taking these pills caused me side effects like headache and dizzyness. That's a sign of these pills going to work! After that, the side effects eased off.
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Avatar universal
I have been diagnosed with bile reflux.  I was prescribed cholestyramine, a bile sequestrant which has helped tremendously.  I take a regular dose every day, and also take it when I feel the burning in my stomach.  The burning goes away immediately after about 1 teaspoon.  I take the teaspoon in 1/4 teaspoon amounts slowly on my tongue, then slowly swallow bits with water - letting it linger.  I take 4 1/4 teaspoon amounts before each meal on an empty stomach.  It helps about 90% of the time.
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Avatar universal
Look into the linx procedure. It helped me a lot! Until I accidentally had an mri. Now I have chest pain and nausea and side pain. I feel so sick right now, but I'm not actually ill. I am pretty sure it's the bile reflux again. I can taste bike and I was in er with chest pain, they did many tests, it isn't my heart. I had a follow up with my Dr. Repeated ekg and x Ray bc my side bc of pain. Have another follow up with her next week. She's almost positive it's the refux again. I had my gall bladder out in 2011. She wants another scope and so on...
Helpful - 0
1 Comments
I have been diagnosed with bile reflux.  I was prescribed cholestyramine, a bile sequestrant which has helped tremendously.  I take a regular dose every day, and also take it when I feel the burning in my stomach.  The burning goes away immediately after about 1 teaspoon.  I take the teaspoon in 1/4 teaspoon amounts slowly on my tongue, then slowly swallow bits with water - letting it linger.  I take 4 1/4 teaspoon amounts before each meal on an empty stomach.  It helps about 90% of the time.
Avatar universal
I'd like to know too.  Just diagnosed via endoscopy yesterday
Helpful - 0
11746284 tn?1449567413
I am researching for my elderly mom.  I am learning that gerd and bile gerd are different.  I read sickboys cure for the bile gerd and I appreciate that.  Does gerd also cause thick salivia?  I am trying to rule out different things.  Thanks!
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Avatar universal
What foods promote the production of bile, so i can stay away from it
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Avatar universal
- Ursodeoxycholic acid

More Info:
http://www.mayoclinic.org/diseases-conditions/bile-reflux/basics/treatment/con-20025548
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Avatar universal
the sick boy is not here . it means he is cured . voila
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Avatar universal
Did you find a cure?
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Avatar universal
The catalyst is delayed gastric emptying, causing backflow of acids into the esophagus
The cause of delayed gastric emptying is acid blockers, low stomach levels.

Um, but the problem was there to begin with...people sought medical help because it was an issue and THEN were prescribed the PPIs. Not before.
Helpful - 0
Avatar universal
I too had my gallbladder removed 40 years ago....my bile reflux has never gone away.......small meals, low fat diets, bland diets, no caffeine, no acids of any kind......read ingredients if you see the word "acid" do not use...no fruits...no chocolate, milk also has milk acids....so eat little dairy, no vinegar or lemons, oranges, grapefruits.....this is hard to do but after 40 years I have learned.    Your brain is connected to your gut, ask your doctor for anti-anxiety pills (Lorazepam 0.5 mg) they really help, use only until you feel relief, do not get addicted to them.  I take Omeprozole (prescription Prilosec) 20 mg every morning and 1 Lorazepam 2 hrs before bedtime.....but you still need to watch your diet!  I also was diagnosed with Celiac Disease.....no wheat, barley, remember Soy Sauce is not Soy it is wheat ....do not eat any ingredient that say "modified", corn, garlic, onions.  I know this sounds impossible but it works and if you do not do this the next problem you will have is Barretts disease which can cause Cancer, bile reflux can cause serious damage to the whole GI System!
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Avatar universal
OOPPS! Lots of errors in there. Labs not labels, and fogginess not goggles, and protonix not protein. I am new to this community board thing. Thank you for any help you can offer!
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Avatar universal
I was diagnosed with bile gastritis in November. I have lost 15 pounds and been sick since September. I have had endoscopy, CT scans, ultrasound, MRI of abdomen and head (now I am suffering from dizziness and weird foggy brain feeling after I eat), labels, and X-rays. Thousands of dollars in medical bills and loss of wages. I am at the end of my emotional rope. I believe this CAN and SHOULD be corrected with diet. I do not have gallbladder and want to be as healthy as possible. First of all, did you ever get a weird feeling, goggles, anxiety, or dizziness from this? I have NEVER had these issues in my life until September and it sent me to the ER! Im on carafate and protein (PPI). I am trying to taper off of PPI by taking it every other day. I get very sick from acid rebound when I just stop since my stomach is so raw. Any suggestions? I need help ASAP.
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Avatar universal
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
Helpful - 0
Avatar universal
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
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Avatar universal
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.  
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Avatar universal
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.  
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Avatar universal
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
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Avatar universal
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
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