Brittany’s Story

My Crohn’s disease is resistant to all medications. It got to the point where I was losing liters of blood daily, living in the bathroom, receiving daily iron infusions via a PICC line, and taking high doses of pain medications. I was in agonizing pain, unable to do or eat much, and struggled to keep up with life. Even the little things were almost impossible to do.

I have participated in five clinical trials. Though there were stressful moments but I’m thankful that I had the opportunity to participate in them. Clinical trials are an opportunity to get relief, whether short-term or long-term. If a medication works for you during the trial period, it can give the doctors a new idea about what medications might work best for you.

Overall my clinical trial experiences were good. My body accepted the medications, I had minimal side effects, and the doctors were pleasant to work with. However, none of the medications helped my disease. It was discouraging, but I have no regrets because I never would have known unless I had enrolled in these trials. Many patients will find a drug that works for them in a trial.

Before you participate in a clinical trial, I recommend speaking and hearing from other patients about their experiences, in addition to working with your doctor.  Always be your own advocate and ask a lot of questions before signing the consent. Also, remember that just because you have signed the consent, doesn’t mean you are required to stay in the trial. If you have further questions, please reach out to the Crohn’s & Colitis Foundation for resources.

The two most difficult aspects about clinical trials for me were: not knowing if I was on a placebo or the real medication and the possibility of not being able to continue the medication post-trial because it’s not FDA approved.

In my opinion, it’s always worth it if any medication, whether clinical trial or not, gives someone relief for any period, in hopes that it will be approved by the FDA soon. Clinical trials provide opportunities for patients who are out of options and have nothing to lose. They can be intimidating for many people because of their uncertainty. It’s important to remember that patients are monitored carefully and undergo many tests and procedures while on the medications.