From panic to possibility: Jonathan’s journey with Crohn’s
Jonathan’s story begins in the rough terrain of adolescence, when Crohn’s disease began its unseen work. Symptoms appeared as a stubborn redness around his lips and, increasingly, urgent bathroom needs that disrupted everyday life. A basketball tournament turned into a stressful moment, with repeated trips to the bathroom and a growing fear that he wouldn’t be able to manage. By the time he started secondary school, doctors discussed a more permanent solution: the possibility of an ostomy bag, or stoma.
Crohn’s disease and ulcerative colitis are inflammatory bowel diseases (IBD) that affect about 50,000 people in Ireland. They occur when the immune system misfires, causing ulcers, swelling, and pain along the digestive tract. Jonathan’s journey through diagnosis, treatment, and eventually a stoma reflects the broader challenges many young people face—grappling with changing bodies, treatments with tough side effects, and a longing for normalcy.
The turning point: a stoma and a new sense of freedom
After multiple procedures and a difficult recovery period, the idea of living with an ostomy bag became a workable reality. Jonathan recalls a vivid moment that signaled life beyond the constant anxiety: a bus ride from Claregalway to Eyre Square in Galway city center. For the first time, he could board a bus without worrying about an urgent need to escape or bail out mid-journey. “I’ll never forget I was looking out the window thinking, oh my gosh. I felt like a weight had lifted off my back,” he says. The panic of leaving the house, always a potential barrier, began to fade.
Adapting to life with a stoma was not a linear path. The first year post-surgery brought image concerns, adjustments, and a period of intense adaptation. In his own words: “There is a whole adaption phase. The first year, I had a lot of image problems and adjusting to the bag after the first surgery.” Recovery can be long, but the payoff—freedom from constant worry—made the effort worthwhile. Eventually, what felt like a meticulously timed operation became routine: “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.”
Beyond surgery: support, information, and community
Jonathan credits Crohn’s & Colitis Ireland for playing a crucial role in his journey. The organization provides helplines, updated information, and a supportive community for people living with IBD. “They have been life-changing for me,” he says, emphasizing how access to reliable information and a compassionate network can make a difficult diagnosis more bearable. Through social media channels and the new Survival Project podcast, Jonathan shares his experiences to help others facing similar challenges. His platform, including Instagram, TikTok, and YouTube (@jonathanjhealy), has become a beacon for those seeking guidance and reassurance that life with Crohn’s—and a stoma—can be rich and meaningful.
Living with purpose: turning diagnosis into action
World Stoma Day, observed on October 4th, highlights the realities faced by ostomy users and the progress in stoma care. Jonathan’s story underscores that a stoma is not merely a medical device but a doorway to renewed independence. He describes a future shaped by resilience, curiosity, and a commitment to helping others navigate chronic illness. “It’s great to have a podcast and share on social media, because I always think when I look back at that age, how life could have been so much easier if I just had someone I could look up to, watch their content and feel: ‘Oh my gosh. You know, this isn’t the end of the world. My life will continue, and it will continue in a much better way’.”
Jonathan’s journey—from urgent bathroom needs to public transit without fear, from isolation to community—illustrates a powerful truth: with the right support, information, and the courage to try, life with a stoma can be full and freeing. His message is one of hope for anyone facing Crohn’s disease or IBD: you are not alone, and your life can expand in surprising and meaningful ways.
