Participating in Study Becomes a Difficult Decision

Participating in Study Becomes a Difficult Decision

crohn's corner
Last week I received a phone call from someone at the hospital where I see my gastroenterologist. She told me that another GI in the practice thought I would be a good candidate for his study. She then told me about the study, and what I would have to do. That would include going to their offices once a week for five weeks for physicals, rectal swabs, and blood work. She also told me about the medications I would have to take.

She was very excited when we went over my health history. I was exactly who they were looking for.

I was interested when we we first were talking, and I was excited because it sounded like a good opportunity to possibly help others. The study sounded sensible. As a patient who has failed everything I’ve tried, this would be a possibility of helping other patients like me, who also have failed with many of the same medications.

I did not consider whether the medication could help me or not. I hold the opinion that I’m probably not going to improve significantly from any medications at this point. However, by joining the study I could make a difference in other people’s lives, if not my own. As a Jew, I’m committed to making the world a better place, which is what we are taught we must do.

So, I should enter the study, right? My husband and I discussed it; we both agreed I would be helping others, and that the medications I would need to take wouldn’t harm me.

I was about to say “yes,” but I could feel myself resisting. I would need to drive about two hours one way (that’s how long it takes to get from my home to this doctor) every week, for five weeks straight. I could continue to take my own medication, but right now is kind of crucial. I’m about to change my own protocol for Stelara to see if it makes a difference, and if I did the study, would I be able to know if my new regimen was working, or if it was the medication for the study that was working? I looked at it all again, and had to admit to myself that I didn’t really want to do the study.

I feel guilty. Maybe I could be helping someone else. But I also have to consider my own parameters. Between the travel, commitment and my own current medical path, this wasn’t going to work out for me. I will email the researcher, who was so excited on the phone, and tell her I’m sorry, but I just can’t be part of the study. I know she’ll be disappointed.

Maybe someday a study that’s right for me will come along.

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