Danielle's StoryClinical Trial Story
I remember my doctor explaining that this test entailed a slight risk of the capsule becoming lodged in the digestive tract. Well, I was one of the lucky few where the capsule became “stuck”. For several weeks, I had numerous x-rays to monitor whether I had passed the capsule. At each x-ray, I would cross my fingers that the capsule would be gone. Unfortunately, the “finger-crossing” didn’t work and I was put on a medication in the hope that it would reduce the inflammation enabling the capsule to pass on its own.
In those early months after diagnosis, I began researching as much as I could about Crohn’s. With my doctor’s encouragement, I even obtained a second opinion concerning my treatment. Besides enabling me to be a better informed patient, the research along with the second opinion, gave me a sense of control over a very unpredictable disease. I had a hard time understanding why I got Crohn’s and even more so, believing that I actually had it. With a daughter in college, I was at an older age in the diagnosis spectrum. Crohn’s didn’t run in my family and for the most part, I was leading a very active life and feeling good with no symptoms. I felt I owed it to myself as well as to my family to stay engaged with my medical care as much as possible.
After being on a medication for a couple of months, I ended up in the emergency room with an obstruction and required a resection. I tried to stay positive and find a silver lining through all of this….at least the damaged tissue and “pesky capsule”, as my doctor liked to call it, would finally be removed. After surgery, I was at a “reset” point and given three options, including enrolling in a clinical trial specifically geared towards patients who just underwent an intestinal resection. The trial involved Fecal Microbiota Therapy (FMT). As soon as my doctor mentioned the FMT option, I knew it was the choice for me. It was the first time in many months I experienced a sense of hope to change the course of this unpredictable disease. I had read about FMT and truly believed in the reasoning and science behind it. Also, I welcomed the idea of participating in a clinical trial as a way to further research that could lead to future treatment options for others. My one fear was that my disease could become worse if the trial didn’t work. That fear was put to rest, however, by close monitoring thru lab work and exams. I also knew that I could leave the trial at any point should the need arise.
With my trial almost complete, I have found the experience very positive and discovered a few unexpected benefits. For instance, I realized that in addition to my doctor, a clinical trial research coordinator is involved in my care. With her support, I have one more person looking out for me. This particular trial also motivated me to completely revamp my diet. I viewed the ability to participate in this FMT trial as a gift and wanted to do as much as I could to provide a healthy environment for the new “beneficial” bacteria that was being donated to me. I eliminated processed foods, reduced sugar intake, and began to incorporate fruits and vegetables into my diet everyday….something I had never done in the past. And now, even if the trial is unsuccessful, I have come thru it feeling better and living a healthier lifestyle.
At the end of the day, each of us has a unique story to tell. For those of you who are interested in clinical trials, but scared or nervous to participate, I encourage you to gather as much information as possible. Ask a lot of questions and don’t be shy…no question is too small. Speak to other clinical trial participants about their experiences. Whether or not you decide that a clinical trial is right for you, take comfort in the fact that you are an engaged patient acting as your own advocate.