HIV-associated diarrhea study

[Trish]

A couple of weeks ago I entered a study for HIV-associated diarrhea at KCUMB (Dybedal Research Center) in Kansas City, MO.  After dealing with diarrhea on a daily basis for nearly 20 years, I decided I needed to do something because nothing else seemed to help ease the diarrhea.  I got tired of rushing to the bathroom, leakage, etc.  You get the picture.  Anyway, the study is a double-blind, randomized study.  I began taking the medication 2 weeks ago and the results so far... still pooping the same.  I'm assuming I'm on the placebo for time being, but I've been told that eventually I'd be on the actual drug which is "Crofelemer" (I think I spelled it right.)  It's being researched by Napo Pharmaceuticals.  There are only 50 sites throughout the U.S. and they enroll approximately 10-20 subjects at each site.  I'll be in the study for 24 or so weeks.  I'm hoping this medication is going to work in the end, because my butt is tired. lol  Each day I have to call in to report on my everyday poops.  They ask what kind of poop it was: watery, loose, formed, hard or very hard.  They even give pictures of each one.  Eeeewww!  And they ask questions like "Have you had any urgency?  Leakage?  Severity of abdominal pain? etc.  Being that I've been a pro (so to speak) on diarrhea for many, many years, I was told that I need to act as though it's new to me.  Living with the diarrhea & cramps for all these years, it's become like second nature to me and I just live with it.  So I have to think like a newbie to it... they don't want me to underestimate the severity of the diarrhea.  I'll keep you posted.

Oh yeah, another reason I joined the study... I figure I may as well get paid to poop!!  lol