BILE in my stomach and BILE reflux! HELP Needed. please!! - Digestive Disorders Message Board

joe9 · 08-02-2008, 04:15 AM

HELP!!! ADVICE, PLEASE!!

I had my gallbladder removed 6 years ago and suffered from bile salt diarrhea ever since, but have successfully controlled it by taking cholestyramine, colestid, and welchol... but in the past 13 months I have had a persistent sour taste in my mouth and a coated tongue, and for the past 30 days have developed a recurring sore throat. I had one endoscopy 10 months ago which was fine... but I insisted on another one yesterday, which was not so fine:

My GI found a "half-liter's worth" of bile in my stomach during my endoscopy yesterday. He also said my stomach was inflamed. And NOW I am one devastated, terrified, and confused individual.

I am completely lost and without understanding or hope of any of this. My GI didn't even think it was necessary to do the endoscopy because I'd just had one 10 months ago and everything was fine... *I* was the one who convinced him to do another. HOW IN THE WORLD CAN I HAVE SO MUCH BILE IN MY STOMACH WHEN I TAKE A BILE SEQUESTRANT FOR DIARRHEA EVERY DAY???

He recommended that I take Carafate to coat my stomach 4 times a day, and this is something I am dead set against, but I am so frightened that I have no choice. I have started taking the Carafate.

If Keriamon is reading this, the GI is now possibly leaning toward the "slow emptying stomach" thing even though he scoffed at the notion when I suggested it to him last month. Don't you love these doctors? But though we have not discussed it in detail, I am NOT going to take the highly-dangerous Reglan, for reasons I've discussed elsewhere.

Of course, he and my wife and family caution me "not to read the internet!!" about these problems, but I already have. And it's not pretty. I cannot believe that I COMPLETELY FORGOT to ask him how my esophagus looked - which was the whole reason I asked to do this endoscopy!!! I have to assume that my esophagus is fine (at this stage - but how about in 6 months??). I guess if anything had been wrong with my esophagus at this point he would have told me. But I still have a sore throat that's worse today than ever (maybe made more irritated by the endoscopy proceedure itself??).

I've read a lot of horrendous things about "bile reflux"... that it's almost impossible to control, and that ordinary dietary changes and lifestyle changes will not control it, that only medicines (which I am opposed to!!) and possible surgery (!!!) can keep a lid on it.... but yet, even after meds and surgery, the bile reflux may still return!! As time goes on, it may turn into Barrett's esophagus and then esophagel cancer!!! And this is one of the worst kinds of cancer you can get!!

I am so mixed up. I am supposed to see the doctor again in two weeks.... he's taken more blood from me to run more tests. In the meantime, I am now going ahead and taking the Carafate to coat the stomach, but I am trying to decide what to do about the Colestid/Cholestyramine I've been taking.... the doctor tell sme to continue taking this for my bile diarrhea, but I almost want to STOP taking those bile sequestrants all together and see if I can make it on my own and deal with some occasional bile salt diarrhea. Maybe those bile sequestrants are bothering me.... but at the same time I am wondering if maybe the problem is that I am not taking ENOUGH of the bile sequestrants in order to soak up all of the bile???? I have asked my doctor about that, and he doesn't think that's the case, but it's something I am thinking of trying on my own anyway:

During the past 13 months I have actually taken LESS doses of Chloestyramine/Colestid/Welchol because I do not need that much of any of them to simply control my post-gallbladder diarrhea. I mean, it's common sense -- why take a lot of that stuff if you don't need that much to control your bile D, right? Well -- I am thinking of taking more to see if it takes care of the excess bile inmy stomach too.

Oh, I should mention that even though I didn't want to take any anti-acid meds, for the past 4 weeks I have caved in and taken Nexium and then Prilosec at my GI's request. When he says my endoscopy showed an inflamed stomach, I wonder if THESE PPI's are what caused this??? I didn't have any inflammation or any problem on my endoscopy 10 months back when I wasn't taking these drugs. He wants me to keep taking thse, but I am stopping them until I see him again in two weeks.

I am completely mixed up, and depressed. I don't even want to wake up in the morning. I can't tell you the negative things that are going through my mind.

hcvsd · 08-04-2008, 02:20 AM

I'm sorry your going through this I dont have knowledge to give advise, I'm sure some one will.

Microsludge · 02-10-2009, 08:01 AM

Joe,

I have been reading some of your earlier posts and many of your symptoms sound remarkably similar to mine. I have been going through this nightmare since November 2008 have seen tons of doctors & there are still no answers. Docs initially thought my gallbladder was the culprit, but after many tests & scans; they dismissed it. I have no stones, no sludge, etc. My symptoms are chronic diarhhea - yellow, sometimes semi-formed bowel movements, that are also at times greasy and a CONSTANT bitter, sour, metallic taste in my mouth. I have long suspected that bile is the culprit in this and that the issues with my mouth & colon are related. No one have been listening. The only "medical" interventions that had been offered to me up until last week were Citrucel, exercise & stress reduction. Then some genius selt I might have a bacterial overgrowth of my small intestine & I was put on xifaxan - I am now on day 5 and nothing has changed.

I would be interested in hearing how you are doing.

kingdigy · 11-19-2009, 09:53 AM

I have bile in my stomach as well, plus i'm depressed. My doc. only put me on domperidone and magnesium trisilicate but they are not helping. What do I do??

kingdigy · 11-27-2009, 06:30 AM

Joe, I'm very sorry for what you are going through but trust me, you are not alone. It's true, Bile Reflux is a very bad disease. I also had bile pool in my stomach when I did an endoscopy in July this year and it's a day-to-day struggle. I have major depression as well and so it even makes my condition worse. The unfortunate thing for me is that, I live in Ghana, West Africa and so don't really have access to a good healthcare facility and even good drugs that could help me manage my condition. I have had no gall bladder surgery so I even wonder how I got this disease. People are attributing it to stress, which may be true... Unfortunately, I'm not a doctor so I can't tell you much but I think from all that I've read, the following may help you manage it a bit:

Don't eat too much fat
Sleep with your upper portion inclined at about 60 degrees
Eat smaller bits of food at regular intervals
Your last meal for the day should be at leat 3hours before bed time

The truth of the matter is, all these things may just alleviate the pain but the real solution to the problem is God. Do you believe in Him?
Read James 5:13-16 and act accordingly. I will pray for you too, ok. I am believing the Lord for a miracle and if you do too, I hope we'll get there. My name is King Taylor; do remember in your prayers too.

I'm very sorry once again for what you are going through