From Diagnosis to a Life-Changing Decision
Jonathan’s journey with Crohn’s disease began in childhood, with early signs that gradually escalated into a condition that would reshape his life. Symptoms such as persistent redness around the lips, urgent bowel needs, and the toll of recurrent medical interventions led him to specialist care at Crumlin Children’s Hospital. As his Crohn’s progressed, doctors weighed the options, and the prospect of an ostomy bag—an opening (stoma) created in the abdomen to divert waste—became a real consideration during his teenage years.
For many living with inflammatory bowel disease (IBD), a stoma is not just a medical procedure but a turning point in how they navigate daily life. Jonathan’s experience echoes the experiences of tens of thousands in Ireland who cope with Crohn’s disease and ulcerative colitis, the two most common forms of IBD. The decision to proceed with a stoma is deeply personal, balancing medical necessity with the desire for a life less constrained by symptoms.
The Moment When Freedom Felt Possible
One memory stands out clearly for Jonathan: a bus ride from Claregalway to Eyre Square in Galway. Before the stoma, leaving the house could trigger worries about sudden bathroom needs and embarrassing accidents. On that day, looking out the bus window, he felt something shift. “The first time I remember realising that my life had changed for the better was getting on a bus … and not having to worry that I was going to have to get off the bus randomly,” he recalls. “I felt like a weight had lifted off my back.” The constant panic of leaving the house gradually dissolved, replacing fear with a sense of possibility. It was a pivotal moment of affirmation during a difficult adolescence.
Recovery after the first major surgery was not immediate or easy. Jonathan describes a long adaptation period during the first year, marked by image concerns and learning to live with the bag. Yet the process gradually transformed from a “military operation” to a routine—one that could be managed with practice: remove, bag, secure a new one, and move forward. This evolution mirrors the broader experience of many with ostomy bags who learn to integrate the stoma into daily life with growing confidence.
<h2Adapting to Life with a Stoma
The initial emotional and physical adjustment is real and present for many teens facing a stoma. For Jonathan, the early days involved grappling with self-image and the practicalities of care. Over time, however, the ostomy bag became a tool for independence rather than a symbol of limitation. “Initially it’s like a military operation and then it’s just like brushing your teeth,” he notes, underscoring how routine can replace fear.
Living Well with IBD: Support, Education, and Community
Today, Jonathan is open about Crohn’s disease and the stoma, sharing his experiences on Instagram, TikTok, and YouTube under @jonathanjhealy. He recently launched The Survival Project podcast, a platform for people navigating chronic illness to share lived experiences and practical guidance. For many, these stories offer reassurance that life with IBD—and with a stoma—can be vibrant and meaningful. Crohn’s & Colitis Ireland (CCI) has been a cornerstone of his support network, providing helplines and a wealth of information to patients and families. CCI’s advocacy work also aims to reduce stigma and ensure access to essential care and resources.
World Stoma Day and a Message of Hope
World Stoma Day on October 4th shines a light on ostomy care and the millions living with stomas worldwide. For Jonathan, the act of sharing his story is itself a form of advocacy—an invitation for others to imagine a future where chronic illness does not dictate the terms of daily life. The “weight lifted” moment is more than personal relief; it is a reminder that medical advances, thoughtful support, and open conversations can transform fear into resilience.
Looking Ahead
Jonathan’s journey is a testament to the power of community, information, and patient-led storytelling. In a world where Crohn’s disease and other IBD conditions can feel isolating, his experiences—and those of many others—offer a path to hope. With ongoing medical management, supportive networks, and platforms that amplify lived experiences, more people living with Crohn’s disease may discover the same freedom that Jonathan found after his stoma operation.
