The inflammatory bowel disease (IBD) community is pretty tight-knit. One could argue that’s a result of the stigma associated with Crohn’s disease, ulcerative colitis, and indeterminate colitis — it tends to bind people together because of shared experience. People with IBD find close, lifelong friends within the community because it’s difficult for anyone except another person who has IBD to fully understand what it’s like to live with these diseases.
There’s a large, vibrant IBD community to tap into, but for me there was always something missing. IBD is quite misunderstood in the public eye and ulcerative colitis often gets confused with colitis from other causes or even with irritable bowel syndrome (IBS). Educating others on the specifics of ulcerative colitis and how it is different and similar from Crohn’s disease, colitis, and IBS, often felt overwhelming.
After my j-pouch surgery (also called ileal pouch-anal anastomosis, or IPAA), I felt disconnected from the IBD community and in a state of limbo. It took time to find other people diagnosed with ulcerative colitis who also had j-pouches. We still have IBD, yet our needs are different and distinct from others in the community. It’s my opinion that we’re an underserved group within an already underserved community. I’ve spent so much time explaining j-pouches to healthcare professionals that I joke that I should have cards made up in order to save my voice.
For these reasons, I felt it was important for me to join the board of the National Ulcerative Colitis Alliance (NUCA). NUCA aims to provide education and support specifically tailored to people with ulcerative colitis. Through programs that focus on the specifics of ulcerative colitis, we can nurture and deepen the community while providing a safe space for those diagnosed with this disease to find support and guidance. What’s more, NUCA is filled with people who understand this disease because they live with it, which helps provide perspective on what is truly needed.
I’m looking forward to what NUCA can do and how it can serve people with ulcerative colitis and their families. Having such a group when I was first diagnosed would have been a game-changer for me and helped me navigate my disease journey with fewer missteps. As I go about my work on the board of NUCA, I think back to what it was like being newly diagnosed and what programs and services could have helped me to live a better life.
It’s going to be an amazing journey to grow NUCA and develop opportunities for ulcerative colitis patients to help improve their quality of life. It’s my goal to bring as many people as I can along for the ride, and I challenge you to spread the word and tell one other person affected by this disease about NUCA. Together we can reach people diagnosed with ulcerative colitis and their families and help them as they work through the challenges of living with this disease.
Amber J Tresca