Jill's Story

Clinical Trial Story
After being sick for several months with symptoms including fatigue, stomach pain, and diarrhea, I was diagnosed with moderate-to-severe ulcerative colitis when I was 15. Unlike a lot of patients, I was diagnosed fairly quickly, but only after a doctor suggested having a colonoscopy. After receiving my diagnosis, I started a corticosteroid medication for several months. My doctor explained how my colonoscopy showed I was much sicker than I presented and, even though things had gotten better, I needed to be on a maintenance medication. I started an aminosalicylate. I made my treatment decision based on what was covered by insurance and how much out-of-pocket expenses we would incur.

My parents wanted to be sure that I would be able to maintain my treatment plans once I was an adult, so they taught me to ask questions about my health, my insurance, and to advocate for what I needed. During the months following my diagnosis, I started slowly regaining my strength and quality of life. I did fine on that medication for two years, with a few minor ups and downs and some enemas. However, my symptoms returned, and the medications stopped working.

I transitioned to an adult gastroenterologist’s care, but as my symptoms worsened, my doctor approached me about being in a yearlong double-blind clinical trial for a Janus kinase (JAK) inhibitor. I read the lengthy clinical trial information, talked with my family about the pros and cons, and agreed to join. It was a plus to have all the medical visits and colonoscopies covered as finances are always something I weigh in my decisions. A con was driving home from college every month for doctor visits and labs. It was a heavy responsibility to be just 18 and making this big decision.

For the first part of the study, the medication I was given worked great. However, midway through they changed what I was given, and it stopped working. It was stressful to start college trying to figure everything out while also trying to figure out my health. I ended up dropping out of the study after the switch because my doctor did not want my colon to be damaged too much. Even though the drug didn’t end up working for me, the clinical trial was a good experience. The trial coordinator was a very positive part of my experience and easy to work with.

Last year I started on an injectable biologic, while staying on the aminosalicylate medication I was on before the trial. This new medication is working great and I have not had any flares since starting on it. At this point, my quality of life has not been greatly affected. I believe this is due to the support that my family and doctor give me.

I would participate in a clinical trial again because it can help researchers know if what they are doing is effective, and it will help other people with my disease if the drug is released on the market. I already knew a lot about the clinical trial process from my health science courses in high school, but I did want to know if I could drop out if it was not effective for me and what the health risks were now or in the future. I would advise other patients considering participating in a clinical trial to read all of the paperwork and not feel afraid to ask questions about the trial – ask questions, talk to others, and don’t be afraid to ask for help if you need it.

 Hometown: Apex, North Carolina