Mark's Story

Clinical Trial Story
I was diagnosed with Crohn’s disease in 1993 at the age of 13. A common steroid let me carry on and go to school but every time I tried to switch to a new medication, the results were less promising. I spent three years yo-yoing up and down on this steroid. We lived in the mountains of Colorado and had to travel about 4 hours to the nearest gastroenterologist. This made each medication change a huge ordeal for me and for my family.

Eighteen years after my diagnosis, and many medications later, I had emergency surgery to remove 2 feet of my small intestine. I was in the hospital for about 3 weeks after my surgery so they could monitor for digestion activity and make sure I didn’t develop a blood clot. I was asked to participate in a study with the dose of my blood thinner medication. The researcher had developed an algorithm that she believed could be used to calculate the best dose of blood thinner medication; not too thin and not too viscous. I did my initial consent and screening visit there in the hospital room a few days before I was discharged. I was nervous about participating in a study on such a crucial treatment in my recovery, but the research team reassured me that I would have my blood tested on the normal schedule to make sure my blood was not too thin or thick. For the next 4 weeks I attended weekly visits to the clinic where I would fill out questionnaires about how I was feeling. I got paid $50 per visit, which was really helpful as I wasn’t working at the time. Overall it was a really positive experience.

Two years later, I participated in a trial for an experimental formulation of helminth worms to see if it could be used to treat Crohn’s disease. I did an initial consent and screening visit, including blood tests and an ECG, but was informed a week later that I did not qualify for the study. On one hand I was disappointed, but I was also glad to not have to do the colonoscopies that were required for the study. 

Both of my clinical trial experiences were fairly short lived, but I also work in clinical research so I know that they can be long trials, requiring a lot of tests and visits with your research team. If you’re considering participating in a clinical trial, go speak to the research team and get a copy of the consent. You can take it home with you and talk about it with your loved ones, your GI (if they aren’t the ones doing the study), and your personal doctor. Consider what your schedule will look like over the course of the study period. Do you have any vacations or work trips scheduled that could interfere with the study schedule? Are you on a treatment regimen that is working for you? If so, it may not be advantageous to be in a study where you need to stop that medication. Ask the study team what the requirements are to be in the study and if you’ll have to stop any treatments.

Lastly, talk to others who have been in a similar study. Researchers usually won’t let you talk to others participating in the study you’re considering signing up for, but you can and should seek out others with similar experiences. The Crohn’s and Colitis Foundation has set up a network of volunteers willing to speak to you about their experiences and answer your questions.