From Panic to Permission: A Young Man’s Crohn’s Journey
By his late teens, Jonathan faced a difficult reality: chronic inflammatory bowel disease, like Crohn’s, could soon require an ostomy bag, or stoma. The decision is life-changing, but for him it marked the beginning of a new kind of freedom. This is a story of resilience, community support, and the moment when daily fear gave way to possibility.
The Moment the Weight Lifted
Jonathan recalls a day that stands out in his memory: a simple bus ride from Claregalway to Eyre Square in Galway. Previously, the journey might have been shadowed by worry about bowel control. But on that day, he realized his life was changing for the better. “I’ll never forget I was looking out the window thinking, oh my gosh. I felt like a weight had lifted off my back.”
The small feeling of relief—a moment where leaving the house no longer meant constant panic—became a turning point. “The first time I realised having that constant panic every time I leave the house was no longer there anymore. It was very hard to get around as a young lad,” he says. It wasn’t an easy transition. The path from diagnosis to a stoma involved three major surgeries and a demanding recovery, but the payoff began to outweigh the hardship.
Adapting to Life with a Stoma
There’s no single moment that defines such a journey; it’s a gradual adaptation. Jonathan describes the early years as a period of adjustment and self-image work: “The first year, I had a lot of image problems and adjusting to the bag after the first surgery. Recovery took a while, it was a really tough time.” Yet the routine eventually settled into a rhythm: “Initially it’s like a military operation and then it’s just like brushing your teeth. You completely adapt. You remove it, you put it in a waste bag, attach a new one, and you go again.”
That sense of control over his body helped him reclaim parts of his life that Crohn’s had tried to push aside. Although Crohn’s disease is chronic and unpredictable, a stoma can restore predictability to daily routines—at least in terms of managing waste. For many living with IBD, it’s a lifeline that enables participation in ordinary activities—like traveling, attending events, or simply going out with friends.
Understanding IBD and the Role of a Stoma
Approximately 50,000 people in Ireland live with Inflammatory Bowel Disease (IBD), with Crohn’s disease and ulcerative colitis among the most common forms. IBD arises when the immune system attacks the gut, causing ulcers, swelling, and pain. Crohn’s inflammation can appear anywhere along the digestive tract, while ulcerative colitis typically targets the large bowel. Symptoms often include urgent, frequent bowel movements, reduced appetite, weight loss, cramps, and joint or eye inflammation. The term “stoma” comes from the Greek word for “opening,” describing the surgical creation of an opening on the abdomen to divert waste into an ostomy bag.
For many in Ireland and beyond, Crohn’s & Colitis Ireland acts as a crucial support network. Their helplines and online resources offer information, companionship, and guidance through the complexities of living with IBD and, for some, deciding to pursue a stoma as part of treatment.
Building Community and Sharing Stories
Jonathan has used social media to connect with others facing chronic illness. He shares his experiences on Instagram, TikTok, and YouTube under @jonathanjhealy and recently launched The Survival Project podcast. The goal is simple: to help others feel less alone and to offer practical advice for navigating life with chronic illness. He emphasizes how valuable it would have been to hear similar stories when he was first diagnosed. “It’s great to have a podcast and share on social media because life could have been easier with someone to look up to,” he says. His work aims to remind people that a chronic illness does not have to define one’s future.
World Stoma Day: A Moment to Reflect and Advocate
Crohn’s & Colitis Ireland marks World Stoma Day on October 4th, highlighting the resilience of individuals who live with ostomies and the ongoing need for support, information, and awareness. Jonathan’s journey—marked by fear, adaptation, and eventual liberation—embodies the everyday realities many face. His message is clear: with community support and accessible information, people with IBD can reclaim their lives and pursue their goals.
Looking Ahead
As he continues to share his story and host The Survival Project, Jonathan hopes to inspire others to seek help, learn about their options, and recognize that relief from panic is possible. For anyone living with Crohn’s or living with a stoma, his experience is a reminder that the path to better days can start with a single, courageous step.
