Ten years ago at age 18, I was diagnosed with an incurable digestive disease that I’d never heard of before called ulcerative colitis (UC). UC is a chronic, autoimmune disease that affects 700,000 Americans and is a result of an abnormal response by the body’s immune system which causes the lining of the colon to become inflamed. Symptoms include abdominal pain, urgency to use the bathroom, and weight loss. I dealt with severe symptoms of UC throughout my college career which made it hard to attend class or socialize, as I never felt comfortable being far from a bathroom. My weight dropped dangerously low because I couldn’t keep food down. By working with my gastroenterologist I found an infusion treatment that controls my UC and allows me to live life the way I want. After struggling with symptoms of UC for years I realized I wanted to use my experience to help others living with inflammatory bowel disease (IBD), which includes UC and Crohn’s disease, to raise awareness of a disease that so many suffer with in silence.
While struggling to control my disease, I found comfort in the company of fellow IBD patients at events such as the Crohn’s & Colitis Foundation of America’s Camp Oasis. A friend from camp and I started circulating ideas on how to create a resource for patients to manage their disease. What started as a simple challenge to create a t-shirt that encouraged people to ask us about our disease ended in the two of us launching an online patient community in 2010 called, “The Great Bowel Movement.” Our goal in establishing this non-profit organization was to empower patients to open up about their IBD and start conversations about disease awareness. Our catchy “Ask Me” t-shirts continue to be the organization’s main resource in sparking conversations.
By working closely with my gastroenterologist I was able to find an infusion treatment that controls my UC, which allows me to focus on “The Great Bowel Movement” and fitness-related awareness events for the IBD community. In recent years, I’ve become a veteran participant in Get Your Guts in Gear, a cycling organization devoted to raising awareness of Crohn’s disease and UC, and I even competed in an Ironman competition!
Living with a chronic disease has made me who I am today and taught me patience, strength, and resilience. I’ve learned to deal with extreme pain and complications, push my physical boundaries, and connect with patients on an emotional level. I’m proud that “The Great Bowel Movement” has added a perspective to the IBD community that was previously missing, and for that, I hope our efforts continue to empower patients everywhere.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.