Kira's Story

Clinical Trial Story

Beginning in my college years, I struggled with occasional GI symptoms. I always brushed it off as stress or something I ate. It wasn’t until several years after I graduated and was in my professional career that my symptoms worsened so much that I could no longer ignore it or brush it off. My husband encouraged me to finally see a doctor so we both could see that this was not normal. But, the first GI I went to only saw a healthy looking, young woman, smiling and happy – how could she possibly be sick? He put it off to stress and heartburn, gave me medication for it, and sent me on my way.

For another year or so I believed him. I continued to brush off my symptoms and push through. I respected his opinion as an authority in his field solely based on his credentials. Then, my bad days began to outnumber my good ones. I was in so much pain some mornings it took everything I had to shower and make it to work on time. I always hid how horrible I felt – at work and social events with friends, all of my energy would be spent on faking a smile and trying to keep up with conversation. When I would finally go home, I would collapse and spend days in bed. Eventually, I decided I needed to go back to the doctor. This time, I pushed for him do any testing needed to rule things out. He was certain that it wouldn’t show anything, but decided a colonoscopy wouldn’t hurt. He was surprised to tell me that yes, in fact, I had severe Crohn’s disease. In 2011, I was officially diagnosed, and this began my journey through multiple medications, hours and hours of my own research, and finally feeling empowered to find a new doctor who had more experience with IBD.

Being established with a doctor who took a more active role in research and being aware of new and emerging medications is really what helped take control of my disease. He made me feel comfortable and walked through all paths of treatment, including opportunities like clinical trials, early on. He also encouraged me to look into programs, like the Crohn’s & Colitis Foundation, for support. We tried a steroid, an immunomodulator, and multiple biologics. I worked through elimination diets to see if I could rule any food triggers out. Each of these showed improvement at first, but my symptoms always came back. I was losing weight steadily; I couldn’t keep food down and was on my way to becoming extremely malnourished. The daily pain was excruciating. I was on a steroid for so long that I started seeing side effects (bone density and hair loss). I took medication for nausea and pain at maximum doses. But, my doctor’s determination to find something to put me into remission kept me optimistic and my spirits high – even when looking back this was my lowest and darkest.

When an opportunity for a local clinical trial opened up in late 2012, my doctor thought of me immediately. The particular medication worked differently than the other biologics I had tried, so he and I had some hope. By this time, I felt like an expert in understanding the science behind the medications (I’ve had to explain it to my family so many times). And, after he walked me through the process of the trial, I had no hesitations. My health and quality of life were so poor, I really had nothing to lose. There was also a feeling that by participating, I could potentially be saving someone else from what I’ve experienced. More drugs on the market means more options for those who don’t respond to the typical treatments. I signed up that day and was so excited to get started.

The clinical trial process was not any less intrusive to my life than my typical doctor visit. I was pretty used to getting regular bloodwork and injections. My boss was flexible and let me work remotely on days of my treatments. After about two months in the trial, I was improving and my doctor, who was still keeping a close eye on me through the process, was thrilled with the progress. Then one day, severe pain returned like it never had before. I couldn’t eat anything without vomiting or being in excruciating pain. I was pulled from the trial and hospitalized where they found I had developed a stricture in my colon. My health was so poor after years of malnourishment, that the operation to remove this portion of my colon could not be performed and I was required to be on TPN and a clear liquid diet for eight weeks to build up the strength needed to undergo surgery. In April of 2013, I had a colon resection removing eight inches of stricture and severe scar tissue. But the good news – my Crohn’s disease HAD improved! The medication was in fact healing my active disease and was successful, even though I was no longer in the study at this point. I was so thankful for my participation in this clinical trial – even with the complications. I would do it again in a heartbeat.

Since my surgery and the clinical trial, I’ve had some ups and downs but overall my health and quality of life have improved SIGNIFICANTLY. I feel empowered that I can take an active role in my illness. I am more knowledgeable in how to holistically care for myself and balance medications, exercise, food and nutrition, and mental health and stress relief. I advocate for myself and am not afraid to ask questions from my health care providers and build a support team that I trust. I would encourage anyone in the Crohn’s and colitis community to keep an open mind with clinical trials. Do your research, be educated, ask questions, and most importantly surround yourself with a health team that you trust and feel comfortable with.

Hometown: Redding, California