Jenn's Story

For a young woman at the age of 14, it was devastating. I didn’t want to hear anything about the disease, talk about it, or have anything to do with my friends. I was very confused and angry at the world. Being athletic and not being able to play the sports I wanted to play made things worse.

I tried to hide my disease from everyone, including my friends, but when you are running to the bathroom 20 times a day, it is hard to keep from people. The first two years I had the disease are a blur, and I honestly just felt like giving up. Finally, with a change in medication, I started to see the light at the end of the tunnel, or so I thought.

Next was college, and again I had a lot of high expectations and I was determined to not let this Crohn’s get me down. Once again, Crohn’s took over and, after multiple abscess surgeries, I started to wonder if I ever were going to have a normal life. A severe stricture in my colon prompted me to make the decision to have surgery. I prayed about it and finally felt at peace, hoping this would be the end of my Crohn’s. At the age of 20, I had my first major surgery for my Crohn’s. They took out seventeen inches of my colon and, because of an abscess, I had to have a temporary ileostomy.

Just when I thought things were going to be better, the Crohn’s decided to make a reappearance. Again, I felt myself becoming depressed and thought, “Why can’t I get this disease to just go away?” My treatment did not seem to be working and I suffered from horrible abscesses again. At this point, it felt like I had tried every medication under the sun.

It was at this point that my doctor first brought up the option of a clinical trial. After discussing participating in a clinical trial with my parents, I felt that this was worth trying to see if my symptoms would get better. I also felt that by participating in this study, I could help others in the future. Doing the clinical trial was a little scary as I wasn’t sure if I was going to get the actual drug or a placebo. I was scared that if I didn’t get the drug, things would get even worse for me, but it was something I was ultimately willing to risk. 

Participating in a clinical trial opened my eyes to other possibilities and I became more aware of the advancements being made in research. If it were appropriate, I would participate in another clinical trial. My advice to anyone considering a clinical trial is to do your research. Look at the treatment and possible side effects. Talk to your doctor to make sure that it is something you want for yourself—don’t feel pressured by anyone to enroll in a trial. This has to be something that you want to do for yourself.

Hometown: Ohio