“You may look fine on the outside — but inside you could be fighting a battle every day.”
On Disability Matters, John Comiskey speaks with Victoria Spillane, Interim CEO of Crohn’s and Colitis Ireland, about living with inflammatory bowel disease (IBD), the challenges faced by thousands of people across Ireland, and the vital support offered by the national charity.
Victoria brings both professional leadership and deeply personal experience to the conversation. Having lived with IBD herself for many years, she understands firsthand the realities behind what is often called a hidden illness.
“It’s not an easy gig,” she says candidly. “People often say ‘but you look well.’ But inside you could be extremely unwell.”
Understanding Crohn’s Disease and Ulcerative Colitis
Inflammatory bowel disease is an umbrella term covering two main conditions: Crohn’s disease and ulcerative colitis.
Crohn’s disease can affect any part of the digestive tract — from the mouth to the rectum — causing inflammation, ulcers and bleeding. Ulcerative colitis, by contrast, affects the large intestine.
Both are chronic, lifelong conditions.
Common symptoms include:
▪️ Severe abdominal pain
▪️ Frequent or urgent trips to the bathroom
▪️ Blood or mucus in the stool
▪️ Extreme fatigue
▪️ Joint pain and eye inflammation
In some cases, surgery becomes necessary. Victoria herself underwent life-saving surgery and now lives with a permanent stoma bag after her colon was removed.
“It saved my life,” she explains. “But it’s still a huge adjustment.”
A Hidden Disability
One of the biggest challenges for people with IBD is that the illness is largely invisible.
Many people appear outwardly healthy while struggling with debilitating symptoms and exhaustion.
“It’s incredibly isolating,” Victoria says. “You can be in a room full of people who love and support you — and still feel like the only person who understands what you’re going through.”
Fatigue alone can be overwhelming.
“It’s not just being tired after a bad night’s sleep,” she explains. “It’s the kind of exhaustion where you feel like you could close your eyes and sleep for a week.”
A Growing Public Health Concern
While exact numbers remain unclear due to the lack of a national registry, estimates suggest between 40,000 and 50,000 people in Ireland are living with inflammatory bowel disease.
But Victoria believes the real figure could be significantly higher.
“I’d say it could be triple that,” she says.
Diagnosis can occur at any age — from infancy to older adulthood — making it a condition that affects families across generations.
And the impact extends far beyond the individual.
“For every person living with IBD, there are at least ten others affected — family members, partners, friends, workplaces.”
Treatment and Hope
Treatment options for IBD have improved dramatically over the past two decades.
While earlier therapies were limited to steroids and basic medications, newer biologic therapies and targeted treatments have transformed care for many patients.
“These treatments have been a game changer,” Victoria explains.
Some biologics are delivered through hospital infusions, while others can be self-administered at home through injections. Research into precision medicine is also underway, aiming to tailor treatments to a person’s genetic profile.
“There’s always hope,” she says. “Even if one treatment doesn’t work, there will be others.”
Nutrition, Hydration and Daily Life
Diet and nutrition play an important role in managing IBD — though there is no single diet that works for everyone.
During flare-ups, people may need to follow a low-fibre, high-protein diet to reduce irritation in the inflamed intestine. When symptoms settle, a balanced diet can usually resume.
Hydration is especially critical.
“For people with frequent symptoms — or those living with a stoma — you can lose a lot of fluids and electrolytes,” Victoria explains. “So hydration becomes really important.”
Relationships, Work and Support
Living with IBD can also affect relationships, employment and personal confidence.
Some people worry about telling employers about their diagnosis, while others fear how a new partner might react.
Victoria encourages openness.
“If someone has a problem with your illness,” she says, “then they’re probably not the right person for you.”
Employers, she believes, can play a key role by creating respectful and understanding workplaces.
“Sometimes all it takes is dignity, communication and putting yourself in the other person’s shoes.”
The Role of Crohn’s and Colitis Ireland
Founded more than four decades ago, Crohn’s and Colitis Ireland is the only national charity in Ireland dedicated to supporting people with inflammatory bowel disease.
Despite being a small team, the organisation provides a wide range of supports including:
▪️ A national helpline
▪️ Patient education days
▪️ Peer support groups
▪️ Awareness campaigns
▪️ Information resources and advocacy
The charity relies heavily on fundraising and community support, as it currently receives no government or HSE funding.
“We’re a very small but mighty team,” Victoria says.
New initiatives are constantly being developed — from regional patient events to peer-led support groups and national awareness campaigns such as World IBD Day.
A Message of Hope
For anyone newly diagnosed with inflammatory bowel disease, Victoria offers reassurance.
Sharing experiences, connecting with others and asking questions can make a profound difference. “You’re not alone,” she says. “Support is there — and we’re always here to help.”
To learn more visit Crohn’s & Colitis Ireland.
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
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Read more: Breaking Barriers: Life with a Stoma and the Growing Challenge of IBD in Ireland