BIle Reflux - looking for some answers..

[jj9500]

I had an endoscopy a couple days ago and my GI specialist diagnosed me with Bile Reflux.  He showed me photos of my esophagus and stomach that had green bile in them (gross).  He perscribed carfate for me which is supose to coat and protect the esophagus and stomach (4x per day on empty stomach) and told me to continue with my Kapidex for acid reflux (1 x/day before breakfast).  He did take biopsies of both stomach and esophagus.  They looked pretty irritated in the photos from what I can remember (I was still pretty loopy from the meds for the procedure).  My questions are:  has anybody ever taken carfate?  If so, how long does it take to work?  And, did it work for you?  My symptoms are a burning / gnawing sensation in my upper stomach and sometimes in the esophagus.  I also have a cratchy voice and what feels like tons of mucus in my throat.  Also, I understand the bile reflux is different to treat than than acid reflux.  Is there anything that can be done to totally cure bile reflux?  Does it come and go or will I have this forever? Looking for any comments/ helpful suggestion from anyone else with this problem.  I;ve had acid reflux on and off for about 6 years.  Always on different PPIs here and there when it would flare up.  It was hard to control at times.  Other times it would go away within a month.  This is the first time I've even heard of bile reflux.  Thank you!  

[BB349]

I can realate to your post.....I was also diagnosed (last week) with bile reflux..after an endoscopy......with the same symptoms as described.......burning discomfort in the middle of my stomach. I'm taking carafate...it's making me dizzy, and giving me headaches....but not helping the bile reflux......yet.
All info would be appreciated...I'm afraid I'll never be able to enjoy a dinner out, or a glass of wine again.
My dr. said it can never be "cured"...just managed....great.

[jns1022]

I've been taking Carafate 4 times a day for 2 weeks and haven't noticed any improvement in my symptoms but I haven't noticed any side effects from it either. Also I'm taking Prilosec once a day. Based on symptoms alone, no tests, I was diagnosed with a hiatal hernia and acid reflux.  I have a dull ache in the upper part of my abdomen under my breastbone and my stomach is tender to the touch from there down to my belly button.  I've also been feeling a tightness in my chest up to my throat as well as my back aching slightly. I've been having stomach issues since back in August and had my gallbladder removed in December.  I read that some people develop bile reflux after having there gallbladder removed and am wondering if maybe that is what is going on with me.  Guess I really need to discuss this with my doctor.

[Liz V]

Hi there,
I too have bile reflux. It started right after my gallbladder was removed over a year ago. I also have gas, diarrhea, constipation, stomache cramps. I have constant burning all over but mostly in my abdomen area. Any success in treating/controlling?
Thanks!
Liz

[imct]

hey Liz, did you ever manage to cure your bile reflux issue?

[zewesw0103]

I just wanted to let everyone know that I myself have been treated with bile reflux. I suffered so badly I thought I was having a heart attack. It was scary. They did an endoscopy and told me thats what it was. It started in August of 2010 and its been a couple months. They too put me on carafate and keep changing my meds for the acids. I am starting to feel better. The carafate has been helping me but the acids are still killing me. I have been on protonix and dexilant and everything else under the sun. Its mostly in the evenings. But I noticed that if I drink Silk or some kind of soy milk, it kinda relieves my acids a bit. I also take 2 ranitidine in the evening, sometimes that helps. Some people may heal faster then others. Im still healing. Stay away from greasy, spicy foods, peppermint and spearmint and caffiene...also fatty foods really make acids bad. Hope this helps!

[bigrroy]

I have had bile reflux for almost 70 years - gawd it's awful. No doc or emergency ward had a 'fix' ... not even a temporary one. I had to tough out every attack.

A couple-so years ago, out of sheer desperation I tried ice cream. IT WORKED!!

20 minutes and I was completely ok excepting for a minor 'burnt' feeling in my throat ... which went away within the hour.

Any flavour ... I've tried chocolate, vanilla and butterscotch. Frozen yoghurt does not work.

Good luck.

And pass it on. Bile reflux is bloody 'orrid !!!

[ng1031]

I too have recently been diagnosed with bile reflux. This has started ever since I had my large intestine removed earlier this year. I too am on Carafate. I am unable to take it in the morning because that is when I take my other meds/vitamins (and as we all know you can't take them with Carafate or they won't get absorbed) so I try to eat something small for breakfast when I take my other meds. Then I take my Carafate before lunch, dinner and at bedtime. I got me a wedge pillow to help prop me up at night and I also sit up for atleast 3 hours after I eat. Has anyone else experienced this post total colectomy surgery? Most people get this after their gall bladder is removed but I still have mine. When I had my upper scope I had reflux, irritation, redness and a pool of bile chilling in my stomach. That and the fact that no acid reflux meds except for liquid Di-gel seem to help was how I was diagnosed. I guess if you have it then acid reflux meds don't work because its not an acid but a bile issue. And the liquid helps temporarily because of the aluminum hydroxide and the fact that it coats. They wanted to put me on Reglan but I refuse due to all the issues, warnings, side effects etc. They said it could help the bile empty from my stomach but no guarantees. Just like there is no guarantee taking it 4 times a day won't cause me to get Tardive Dyskinesia. I already had a dead large intestine that had no nerves left in it so I am not risking it. Has anyone else tried anything else? I am trying Marshmallow Root Tea which seems to be helping. At the first sign of an attack I drink a little Di-gel. Take some mediation deep breaths and then if I am capable I make the tea. Or my husband makes it for me. So far this seems to help if I can catch it right when it feels like its going to start. But if its too late the attack comes on and its god aweful. Like a heart attack. Now when I get an attack the next day I feel like someone punched me in my chest. I am just trying my best to avoid the attacks. Is that what everyone else seems to be doing as well?

[selmaS]

  Hi and welcome to the GERD forum.

Many have found that the wedge pillow is not as effective as elevating the head of ur bed...with the wedge u can slide down and not get the benefits from the wedge plus it is not the correct angle u need to be on for optimum results.

I found that ginger tea was helpful for the relief of GERD...but u may have something more going on and would rely on ur Dr for guidance.

[ng1031]

Ginger/Peppermint/Fennel tea use to be a god sent to me prior to my total colectomy surgery. I usually got the Eaters Digest one. Doesn't do as much for this bile issue. I guess the Marshmallow root tea actually has a coating effect similiar to the Carafate and antacids.

[loony56]

I have Bile Reflux. A few others want a support group to this horrible illness. I agree. I have many remedies that could help. Diet change, herbal teas, digestive enzymes, Marshmallow root, chamomile and slippery elm is what helped me with digestive enzymes. If any one is wanted to talk and start a group let me know. Gayle54 and Loony56

[loony56]

I relate to you too! I am starting a support group for Bile Refluxers, interested contact me.  loony56

[loony56]

I have bile reflx and starting a support group with Gayle 54, interested? loony56

[ng1031]

I read that most people with bile reflux have damage to their pyloric valve. Anyone ever been given proof of this and how was it diagnosed? Just wondering why I would be experiencing this post my total colectomy surgery. I am starting to wonder if 8 years of chronic constipation is to blame.

[survivor1111]

ABSOLUTELY!!!  We have to take out  health into our own hands especially with this disease because there is little help it seems.

[ng1031]

I fear barrett's esophagus or cancer. Especially if there is nothing that can really be done for it.

[Katkak]

I want to join.
I have just been diagnosed with bile reflux,  I am taking Omeprazole a proton inhibitor which has eased my attacks but nevertheless I continue burping and feeling full with cramping in my mid section.  I have been on a no alcohol diet since since the day before new year when my most severe attacks began I have lost 15 lbs since cutting fatty foods (but not mint and chocolate) untill I was diagnosed I didn't realize these were strong agitators of my condition.  So it's been three days, I am learning as much as I can but the thought of not going out for dinner anywhere ever again and eating bland and boring food is very depressing, does it get easier over time.  How do you learn to cook again?  When does the pain stop? When does the burping stop?  I have to be strong but I have to be honest I love food and life I am a normal woman I am not obese nor twiggy my bmi is in the normal range,  I want to enjoy a glass of wine again, and have a steak again, will I ever?

[Katkak]

Have you started a support group?

[JLZ0517]

I had my gallbladder out 3 1\2 months ago and suffer from bile reflux and gastritis. I could use any advice to help relieve this.

[Lillye]

I have had bile reflux since before my gallbladder surgery in July of 2011---I have used all of the things you mentioned...I think the digestive enzymes helped as well as the camomile, tea, ginger tea, Zantac, and a protein powder called Whey Cool...I would mix a scoop with a very ripe frozen banana, almond milk, a little stevia and sometimes a bit of pineapple...it helped when I was so nauseous I couldn't eat and lost 30 pounds from an already thin body...I did try Carafate, Protonix, domperidone, and a multitude of natural remedies...I find when it is bad, it just takes time....I even tried acupuncture a few times a month, cranio sacral, massage, chiropractic, visual imagery etc...all helped but prayer and time were the answer...

[JosieBH]

Hi. I am in the UK so may have different drug names. Anyone else in the UK?  I had my sphincter of Oddi cut 12 years ago to alleviate some bile flow problems which solved all the problems. Now I have recently had a whole new attack of similar but not identical symptoms and also a lot of bile reflux which is leaving me feeling really ill and nauseous. I have been prescribed Omeprezole which I think is a PPI (?). Any comments that may help?

[paulx2]

HI, I am a 39 year old man, gall bladder removed, initially had severe irritation of the stomach and then it cleared up for ariound 6 months before returning on and off. I am also in the UK and my specialist just prescribed sucralfate (Which is the UK name for Carafate I believe).

Of course the pharmacist at Lewisham Hospital has now told me that Sucralfate is not available in the UK anymore for the foreseeable future!! Absolutely incredible, I cannot get the medicine the specialist prescribed due to a supply issue!! Now I just haven't got a clue what to do.......this country and the NHS is a joke. My specialist says it is not worth worrying about but I feel that it will ultimately lead to Barretts and/or cancer. Not sure why he keeps fobbing me off...........I suppose he just isn't that bothered but I do know that my 6 year old daughter is bothered that I am now feeling depressed, in pain, nauseous and very very grumpy. I just can't believe that there is no cure or treatment for this even though according to the net it is very serious. As far as I know Josie PPI's (Omaprezole) is for acid reflux, not bile reflux and PPI's can make bile reflux worse. I am not a doctor obviously but I would check it out for yourself online as your doctor will just give you the first thing on his list after he has googled it, take control yourself and MAKE them help you, they are duty-bound and should try to help. I spent 2 years trying different PPI's and got nowhere. If I can ever get my prescrioption I will let you know how I get on with suralfate. Good luck. Paul

[krn1954]

I have recently ,2 weeks ago, been diagnosed, finally...with Bile Reflux. Luckily I am having great relief with the Carafate...some constipation ,but stomach pain  is almost completely gone...I am hopeful that this is the ticket.I have been through every test ,myself believing I had heart problems. So I am now concentrating on doing my part...weight loss,exercise..

[Smiley2000]

Hi there,

I also had bile reflux (lost my Gallbladder a few years prior) and what really helped for me was Gaviscon Plus.  Not the normal Gaviscon.

Something that you can try.

All the best,

[olhares75]

Hi you said you had bile reflux after gallbladder surgery, I am feeling the same at the moment. My surgery was two months ago but I would like to ask you if this symptom went away with time I mean If you no longer have it. Did it get better with time?

[BileConcerned]

Hi,

Can you give me some information about your support group for Bile Reflux?  I was just diagnosed with Bille Reflux and taking Cholestyramine which helps almost completely with the symptoms.  I would like to explore other remedies with other refluxers.

Thank you.