Thu 16 Oct 2008
I signed up to be a medical guinea pig
Posted by Emily under Illness | Tags: clinical trial, drug research, IBS, irritable bowel syndromeNo Comments
I’ve always heard about drug research and clinical trials, but they seemed sketchy to me. Trying drugs that aren’t approved by the FDA and may cause unknown side affects? Hmmm. But now that I’ve been so inconvenienced by Irritable Bowel Syndrome for the past five or so years, I had recently become interested in doing a trial for new IBS drugs, but I didn’t really know how to get involved.
I have tried so many drugs and supplements and treatments for IBS, it would probably make your head spin. I feel like Western Medicine has failed me, but Eastern Medicine hasn’t done much for me either. Some pills help, but they just mask symptoms, or make me feel great for a day or two, then like crap when I’m on the rebound. Some of my medicines that help my symptoms the most give me cottonmouth from hell and/or make me really dopey/sleepy.
So when I got an email the other day from the guy who runs the online IBS support group I’m in (which is really awesome, by the way) talking about a new national clinical trial for IBS patients, my ears perked up. It was for females only and was being done all across the country. He listed the contact information so I called and did a phone screening, and they said I initially qualified and there was a local part of the study going on here in Austin. Then today I got a call from the local research coordinator, and it turns out the people doing the study here are my gastroenterologist’s office, so it’s already with doctors I trust.
The drug has already gone through some preliminary tests and the main side effect is fatigue, which I am already used to due to a sleep disorder and some of my meds. I’ll have to do this for 18 months, but only in the first month do I have to go in a few times for a visit — after the first month or two, I just have to go to the office once a month for a check up to make sure my vital signs and blood work and all that jazz is normal. Best of all, the main research office is south, near my office, so I can probably just go during lunch breaks.
I also will have to do a daily phone check-in, but it’s an automated system that just takes a few minutes, and I’ll have to rank my pain, discomfort, etc. A perk is that I get paid $50 for each office visit, and all the drugs and treatments are paid for.
The information they emailed me, which went over everything in great detail, did say it is a big commitment and can interfere with daily life, and you have to be prepared for that. As my blog title suggests, I place a lot of emphasis on balance. But honestly, after the first month, once-a-month visits aren’t bad, and taking an extra pill twice a day, even for a year, isn’t bad. And the daily check-in is supposed to take only 3-5 minutes.
I’m really nervous because I have to stop taking my other IBS meds to do this (they call it whitewashing) but I am allowed to take a “rescue” medication once a week if I really need it. Overall, though I am really excited to try this. I hope it helps me, but most of all, I hope it helps the IBS community in general. I don’t think enough research is being done to figure out what causes IBS or how to make it better (I doubt there is a real “cure” as it is a functional disorder, not a disease) and it is such a frustrating, embarrassing, debilitating disorder, especially for people like me who have quite a severe case. After many years of suffering and not finding much that really helps, I am more than happy to give this a shot for both myself and the greater good.
I’m not sure exactly how this will go, or if I’ll even pass the first in-person screening. Nonetheless, it will be interesting. I’ll keep you posted.




