When I was diagnosed with ulcerative colitis as a twenty-year old, I never thought I would go so far as enrolling in a clinical trial to manage my disease. I was actually very resistant to most medications in the beginning. It’s hard to come to terms with being dependent on medication for the rest of your life when you are supposed to be in your prime. I felt like my body was betraying me.
It took me longer than it should (I’m a little bit on the stubborn side) to realize that I needed serious medical intervention to control my disease. At one point, I had lost about forty pounds from my already small frame and it was difficult to stand up straight since my muscles were accustomed to a hunched or curled position. I spent the majority of my time in the bathroom, laying down, or staring at food that I just didn’t have the appetite to eat. I was ready to try anything to alleviate my symptoms and regain my quality of life.
Unfortunately, this was not a simple fix. Over the next four years I tried several medications, but only saw a wink of improvement in my disease. I learned to function while in a constant flare and adapted to the limitations that my disease imposed on my life. Eventually I failed all of the approved medications for ulcerative colitis and my doctor scheduled a clinical trial coordinator to come speak with me about study medications.
Enrolling in a clinical trial for a new drug is intimidating. There is lengthy paperwork and the wording may cause even more apprehension. The screening processes usually require an extensive wash-out period, which might cause your disease to worsen. I actually missed out on one drug trial because it suddenly closed enrollment during my wash-out period. But, despite these downfalls, clinical trials serve as “end of the rope” strategies to manage disease in patients who don’t respond to standard of care options. And, without patients enrolling in clinical trials, we would not have the currently approved medications and we would not have hope for future treatments. Lastly, it is comforting to consider the extensive scientific research that leads up to the clinical trial. Well before humans are treated with the drug, researchers work tirelessly to validate the drug target, reveal the mechanism of action, and conduct hundreds of experiments that support the use in human patients. So even though clinical trials seemed scary at first glance, I was reassured by the abundant evidence that supports the safety and efficacy of the medication. These are all considerations that contributed to my decision to enroll in a clinical trial to treat my disease.
So, in late 2017, I signed the paperwork and started my journey as a clinical trial patient. After so many failures, I have learned to practice cautious optimism when trying new medications. Just a few weeks into the open label trial (this just means my doctor and I both know that I am not getting placebo) I began to see positive changes in my disease. Now a few months into the trial, I am feeling energetic again, I am not worried about finding a restroom urgently, and my symptoms continue to improve. It seems that for the first time since my diagnosis, I may be approaching remission.
If you are a patient that is apprehensive about enrolling in a clinical trial, I hope that you may have found something in my testimony that provides reassurance in your decision or optimism for your situation.