PPI's, Reflux - HOW DID I GET HERE??

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Joe9
Regular Member


Date Joined Apr 2008
Total Posts : 34
   Posted 11/24/2008 11:23 AM (GMT -6)   
Hi Everyone... some of you may have heard me from other threads, but things have gotten worse...
 
I have been going through a nightmare that began innocently enough back in June 2007, and it has advanced to many stages to the point where I am now going through GERD, Barrett's Esophagus, and the PPI routine.
 
For those of you who don't know, here's a briefing of how this whole thing began. I had my gallbladder removed in 2002 and had chronic bile diarrhea as a result. I was put on a bile sequestrant called Cholestyramine for the next 5 years which saved my life -- no more chronic diarrhea!
 
All went well until June 2007... my manufacturer of the Cholestyramine went out of business, and I had to survive with other means of bile sequestrants to control my bile diarrhea. But although any of these other new sequestrants controlled my diarrhea problem, I began to notice bad side effects immediately - stomach issues, indigestion, gas, and a white coated tongue and never-ending sour taste in my mouth which plagues me from June 2007 until recently. I went from doctor to doctor, insisting to them that this whole thing was caused as a negative reaction to these bile sequestrants. All they did was tell me it was acid reflux. I tried to periodically try to STOP taking the bile sequestrants, but I could not survive without them because the chronic bile diarrhea from lack of a gallbladder would come right back and leave me unable to leave the house.
 
Well, so I kept taking the necessary meds and just endured the annoying sour taste and white tongue and nasty stomach for about 1 year. Then we come to this past June 2008, about a year later at that point ---  and I started to get a sore throat. Fearing that perhaps I had Barrett's Esophagus (and that this was indeed a longlasting acid reflux situation) I had an endoscopy... my fears were confirmed when my GI doctor did a biopsy and told me Yes, I had a "mild case of Barrett's".
 
I sank into a deep depression, but as of August I have finally had no choice but to take a PPI at last -- Protonix (actually, a generic form called Pantoprazole). The reason I am taking it is because supposedly it is THE ONLY WAY TO HEAL THE ESOPHAGUS AND PREVENT CANCER. I have been on this PPI for three months now out of sheer fear and desparation, along with a stomach coating drug called Carafate --  and I have to admit that my tongue has finally started looking better after 1 year, and the never-ending sour taste in my mouth has improved. I am terrified of taking the PPI for the rest of my life though, as the doctor insists I must - and I have always been a person who REFUSES to take medicines OF ANY KIND. Yet here I am on a variety of pills now, for this and that. In my view, good and true health can never be accomplished with drugs of any kind... but how do I stop them when I am told I have Barrett's Esophagus!??!??
 
The crazy thing is, this all began because I was forced to take a bile sequestrant to help with my bile diarrhea (it's not regular IBS - it's different when your gallbladder removal is the culprit) and then the manufacturer went outof business! I have no doubt that my present (progressive) situation is the direct effect of the bile sequestrant meds. If I didn't have to take this, I wouldn't have reflux/acid/stomach pain/gas/throat pain, etc..
 
But here's one more weird thing. On October 2nd I had the 24 hour PH monitoring test, where a tube is down your throat and into your stomach for 24 hours. Here's the kicker -- my doctor advised me TO GO OFF THE PPI FOR FIVE DAYS BEFORE TAKING THIS MONITOR TEST.... and afterwards I was THRILLED to discover that my acid level was NORMAL, well within avergae range! My acid level was good, even when NOT taking any PPI acid reducer!! But yet, my GI doctor still has me on the Protonix (Pantaprazole) because of the Barrett's Esophagus.
 
But do I have acid reflux or not?? Why was the PH test normal - even while off the PPI? I never felt I had traditional symptoms...I NEVER had any heartburn or anything; all I had was a white tongue and sour taste every day for a year... but it didn't feel like "reflux". And my throat has been sore for the past 5 months now and I have a lot of belching.... 
 
I used to read these boards religiously for help, but since the Barrett's diagnosis I have been afraid to read them because I don't want to learn any negatives or get too scared. I already am familiar with the down sides from past readings....  But now I've begun reading this website again, and I am at a point where I want to stop ALL MEDICATIONS. I want to heal myself naturally - but that also includes not only stopping the PPI, but also trying to find out how to control my Bile Diarrhea from Gallbladder Removal  WITHOUT MEDICINES... and if I could have accomplished that back in June 2007, I wouldn't have progressed to this stage in the first place!
 
So it seems like quite a dilemma. And to say my mind has been all over the place with desparation and depression for the past year and a half is an understatement. :( 
 
 

Post Edited (Joe9) : 11/24/2008 10:35:47 AM (GMT-7)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/24/2008 7:02 PM (GMT -6)   

Dear Joe,

Wow, that is some history and I am so sorry you have had to go through it.

Are you using the Questran or a generic Cholestyramine? Were you using the EON labs which has been bought out by Sandoz?

My hubby has been using Questran for 32 years for his Crohn's. He has always done the best on Questran by Bristol-Myers Squibb.
 
I know you would like to be off the meds as most members do not like taking meds and perhaps you could check into alternative treatment.  But with your dx I also might see about counseling with a therapist for you anxiety.  It is normal for members who have chronic disease problems to experience anxiety and depression.
 
I wish you the best.
Kitt

 
 

Kitt, Co-Moderator: Anxiety/Panic & Depression
& GERD  Forums
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
Clickable Link: Anxiety-Panic Resources


Joe9
Regular Member


Date Joined Apr 2008
Total Posts : 34
   Posted 11/25/2008 5:01 PM (GMT -6)   
Thanks for the reply.

YES - I had been using the generic EON brand of Cholestyramine from 2002 until 2007. It was an absolute Godsend, it was great!! But then it was indeed the replacement SANDOZ which began to give me my troubles.... my system just didn't react well to the SANDOZ, even though they claimed it was the same formula.

I tried Par brand Cholestyramine after that, and also Colestid and Welchol ... but still had problems, it seems. Since 2007 I have been on Colestid tablets for the longest time since this began, and it's the one I'm sticking with, the lesser of the evils, I guess. But all I know for sure is that everything was EXCELLENT when I was on the EON brand... this whole catastrophe started when they were bought out, the very first day I started taking the replacements... (by the way, during my good health period I once tried Bristol-Myers for a few days by mistake, when they were still making EON... but the Bristol Myers also gave me troubles,  so I went right back to the EON - when they were still making it, that is)...

It is the throat pain now (for the last 5 months) and the Barretts (a "mild case") which has me terrified. I definitely have depression and anxiety because of this bizarre situation ... how could I not, right? I am not the person I used to be, and I miss that good health. Sickness has become my entire life and there is no way out, and seemingly no way to control things. But there is no way I can accept this, nor be a happy or contented person with such a condition. I'm still hanging in there because I have to believe I can get out of this mess some day, some way. But no amount of counseling will benefit me, I'm sure .... simply because there is no way to look differently at this situation.

I thank you for your kind words and encouragement.

Post Edited (Joe9) : 11/25/2008 4:06:25 PM (GMT-7)


saddaze
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 12/22/2008 5:42 PM (GMT -6)   
Hi joe

I read your posts and i totally sympathize with you..
I feel like i really have taken advantage of my good health when i had it and now im a shell of who i used to be -- and its scary.

Illness is hell on earth but there are succcess stories in this world - and why cant you and i have our peace ?
We just need to believe in our bodies and in ourselves and pull ourselves out of this web of doctors, pills , and body issues --

im seeking alternative treatment - if nothing else nathuropathic doctors are nicer and dont condescend to our suffering -- bodies are organic therefore the cure has got to be organic as well - one would think.
I dont know if this will be of help ( its all new to me) but at least they are kinder and i need to be heard and not dismissed -- that would be a good place to start - some medical compassion

i hope the rest of it sorts itself out someday

I will pray for you joe -- hang in there... theres got to be a brighter day up ahead.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/24/2008 4:59 PM (GMT -6)   
Wow, that IS some history. Guess I'm not the only one taking a lot of pills for reflux, diarrhea, Barrett's, etc. Seems like the GI Dr's love to give bad news. I did start taking Previcid again and the last 2 ECGs have been negative for Barrett's. I believe it probably just healed over, but sounds better than still having it.

Bill
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