On Disability Matters, host Patrick O’Donnell welcomed Victoria Spillane, Chief Operations Officer with Crohn’s & Colitis Ireland, to discuss World Stoma Day and the realities of living with inflammatory bowel disease (IBD).
A Growing Health Challenge
“In recent years we’re seeing a real increase in people being diagnosed with inflammatory bowel disease in Ireland,” Victoria explained. “And as a result, more people are facing stoma surgery — sometimes temporary, sometimes permanent.”
Victoria knows the journey personally: she was diagnosed with Crohn’s disease at 13 and has lived with a stoma bag for 14 years.
A stoma is a surgically created opening on the abdomen, allowing waste to be collected in a bag. It can be life-changing, both physically and emotionally. “It’s a big adjustment,” she said. “But it can also mean getting your quality of life back after years of pain.”
Stoma Surgery Doesn’t Discriminate
What struck Victoria most is how widely IBD can affect people.
“It doesn’t discriminate by age. We’ve even been told about a 15-month-old baby who now has a stoma for life. At the other end of the scale, older adults are also affected. It really is across all ages.”
Symptoms vary from person to person: diarrhoea, constipation, abdominal pain, joint pain, fatigue, even eye or skin problems. “As we often say in the IBD community — we’re all the same, but different. We can relate, but our experiences aren’t identical.”
Support and Breaking Stigma
Because of this growing need, Crohn’s & Colitis Ireland has extended its services.
- Online support groups for people with stomas and their families.
- A downloadable mini-guide on diet, travel, lifestyle, and day-to-day stoma care.
- Educational videos with perspectives from patients, dietitians, and stoma nurses.
- A helpline and email support, run by people with lived experience.
For World Stoma Day (Saturday, October 4th), CCI is hosting a national webinar on “Breaking Barriers: Living with a Stoma”. The event will cover everything from pre-surgery preparation to body image, intimacy, lifestyle, and the stigma that still surrounds stoma bags.
“We want to break down the shame that some people feel,” Victoria stressed. “You can live a full and satisfying life with a stoma bag.”
Looking Ahead
The rise in IBD cases is still not fully understood — likely linked to genetic and environmental factors, as with many autoimmune conditions. But one thing is clear: people need better supports.
“It’s not just about the surgery,” Victoria said. “It’s about the mental side, too. We need more multidisciplinary teams in our healthcare system, including health psychologists, because living with IBD or a stoma is as much about mental health as physical.”
A Message of Hope
For anyone newly diagnosed or facing surgery, Victoria had a final message:
“There is always light at the end of the tunnel. Even if you feel alone, you’re not. There’s a whole community of us here. Please reach out — whether to our helpline, our support groups, or our webinars. You don’t have to go through this on your own.”
👉 To learn more or to register for the World Stoma Day webinar, visit Crohn’s & Colitis Ireland.
Disability Matters airs every Thursday at 4PM on Phoenix 92.5FM, with repeats on Monday at 3PM and Tuesday at 7AM & 3PM. Podcast available after each show on Mixcloud and on bcil.ie/radio.