As parents, we'd do anything to protect our children's health. But what happens when a chronic illness not only affects your child's wellbeing but also places an enormous financial strain on your entire family? New research from Crohn's & Colitis Ireland has revealed a stark reality: 60% of people living with Inflammatory Bowel Disease (IBD) face serious financial difficulty, with families spending over €3,250 annually just to manage the condition.
What Every Parent Should Know About IBD
Inflammatory Bowel Disease isn't just "tummy troubles" – it's a serious chronic condition affecting an estimated 40,000 people in Ireland, including children and young adults. IBD includes Crohn's disease and ulcerative colitis, conditions that cause ongoing inflammation in the digestive tract.
"IBD typically develops in young adulthood but can occur at any age," explains Dr Orlaith Kelly, Consultant Gastroenterologist at Connolly Hospital Dublin. "The symptoms can vary from person to person, but persistent diarrhoea, abdominal pain, fatigue, and unexplained weight loss are common warning signs that parents shouldn't ignore."
What makes this particularly challenging for families is that IBD is a lifelong condition that requires daily management, regular medical care, and can significantly impact education, career choices, and family life.
The Shocking Financial Reality
The research reveals costs that go far beyond what most families expect:
Hidden annual costs include:
• Specialised medications that can cost hundreds of euros monthly
• Regular specialist appointments and travel expenses
• Special dietary requirements and supplements
• Time off work for appointments and flare-ups
• Emergency medical care during flare-ups
Perhaps most concerning is that nearly half of those surveyed have avoided seeking medical care because of cost, while over a quarter have delayed taking prescribed medication to make it last longer. For families, this creates an impossible choice between financial stability and proper healthcare.
The Emotional Toll On Families
The financial pressure is compounded by significant emotional challenges. The research found that 75% of people with IBD experience anxiety or depression, while two-thirds feel socially isolated. For families, this means watching a loved one struggle not just physically, but emotionally too.
"These conditions affect every aspect of daily life: emotionally, physically, and socially," Dr Kelly explains. "96% of people surveyed said fatigue is a major challenge, and 81% find managing daily symptoms difficult. This can leave people feeling invisible and misunderstood."
For parents, seeing your child or partner cancel social plans, struggle with school or work, or feel isolated from friends adds another layer of heartbreak to an already challenging situation.
Impact On Daily Family Life
IBD doesn't just affect the person diagnosed – it impacts the entire family dynamic:
Family impact areas:
• Education and career: Over two-thirds of people say their condition has influenced their education or career choices
• Social activities: More than 70% report that IBD affects their overall quality of life and ability to participate in social activities
• Relationships: Many face difficulties maintaining personal relationships, especially during flare-ups
• Family planning: The condition can affect decisions about having children or expanding families
Why State Support Is Crucial
Despite affecting over 1% of the Irish population and being a chronic, often disabling condition, IBD is still not formally recognised under schemes like the Long-Term Illness Scheme. This lack of state support is a key factor contributing to the financial hardship faced by families.
"Recognising IBD within the Chronic Disease Management Programme would give patients access to structured, multidisciplinary care, including dietitians, IBD nurses, and mental health professionals," says Dr Kelly.
What Families Can Do Right Now
If you suspect IBD symptoms in your family:
• Don't ignore persistent digestive symptoms
• Speak to your GP immediately – early intervention makes a significant difference
• Keep a symptom diary to help with diagnosis
• Seek support from Crohn's & Colitis Ireland
For families already managing IBD:
• Connect with support groups through Crohn's & Colitis Ireland
• Listen to the Gutcast podcast for practical advice and community connection
• Don't let financial concerns delay medical care – speak to your healthcare team about payment options
• Advocate for better state support by contacting local representatives
Finding Hope And Support
While the statistics are sobering, there is hope. With proper medical care, support, and understanding, IBD can be managed effectively. Organisations like Crohn's & Colitis Ireland provide vital peer support, helping families feel less alone in their journey.
Dr Kelly's message to the public is clear: "Listen to the lived experiences of people with IBD. Don't underestimate what they're carrying, both physically and emotionally. They deserve the same dignity and support as anyone living with a chronic illness."
For Irish families facing this challenge, remember that you're not alone. While the financial and emotional burden is real, with the right support network and medical care, families can adapt and thrive despite IBD.
Get Support
• Crohn's & Colitis Ireland: Visit crohnscolitis.ie for resources and support
• Gutcast Podcast: Ireland's only podcast for people living with IBD, available on all podcast platforms
• Support Line: Contact CCI for confidential support and advice
• Full Research Report: Read "Uncovering the Hidden Cost of Crohn's and Colitis" at crohnscolitis.ie
Important: If you're experiencing persistent digestive symptoms, don't wait – speak to your GP or a specialist. Early diagnosis and treatment can make all the difference for you and your family.
About The Research
Johnson & Johnson Innovative Medicine, in partnership with Crohn's & Colitis Ireland (CCI), commissioned Ipsos B&A research to quantify the financial impact of Crohn's disease and ulcerative colitis on individuals and families in Ireland. The study, conducted with 376 participants in March 2025, explored direct medical costs and indirect costs of living with Crohn's disease and colitis.
Key statistics from the research:
• 60% of people with IBD face financial difficulty
• 75% experience anxiety or depression
• 96% say fatigue is a major challenge
• 81% find managing daily symptoms difficult
• Over 70% report IBD affects their quality of life and social activities
• Two-thirds feel socially isolated
• Nearly half have avoided medical care due to cost
• Over 25% have delayed taking medication to make it last longer
• Average annual cost: Over €3,250 per person
• 40,000 people affected in Ireland (over 1% of population)
