Amy Kelly
Chief Operating Office, Crohn’s and Colitis Ireland
Patients living with inflammatory bowel disease (IBD) in Ireland encounter financial, emotional and health challenges. Many find gaps in healthcare services and experience burdens in both work and daily life.
Inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, affects thousands across Ireland. The findings of our 2024 IBD Patient Survey reveal the significant daily struggles faced by patients, from health and employment challenges to financial burdens.
The daily impact of IBD
For many IBD patients, symptoms are unpredictable and can severely affect day-to-day life. These include extreme fatigue, severe diarrhoea, abdominal pain and other gastrointestinal issues, making even simple tasks difficult.
Patients often feel isolated and misunderstood, as the condition is invisible to those around them, despite its debilitating nature. Lack of free access to toilets and places to sit for relief from extreme fatigue in public spaces also increases isolation.
The unpredictability of flare-ups adds to the emotional and mental toll of the disease, with many patients reporting feelings of anxiety and depression. Yet, mental health services and support remain limited for people with IBD, leaving many without the help they need.
Employment barriers
Our survey highlights how IBD affects patients’ working lives. Many IBD patients are of working age. Yet, their conditions make it hard to maintain steady employment, with 60% of respondents reporting that fatigue was a significant factor in altering their work situation, whether by reducing hours, changing roles or stopping work altogether. Over half of people living with IBD do not pursue additional career responsibilities or promotions due to IBD. More workplace accommodations are needed, plus greater understanding from employers.
Over half of people living with IBD
do not pursue additional career
responsibilities or promotions due to IBD.
Gaps in healthcare
Despite receiving regular care from gastroenterologists, many patients feel unsupported by their primary healthcare providers. Less than half of those surveyed believe that their GP has sufficient knowledge of IBD and access to specialist care like dietitians or mental health professionals is often limited.
The financial burden
Living with IBD also places a significant financial strain on patients. Over 50% of respondents spend more than €1,000 annually on managing their condition. Despite these expenses, IBD is not officially recognised as a disability in Ireland, meaning patients miss out on potential financial support that could alleviate some of this burden.
Advocacy for change
Recognising IBD as a disabling condition is essential to providing the financial support and healthcare services that patients require. Through continued advocacy, Crohn’s & Colitis Ireland is committed to ensuring that those with IBD are no longer overlooked.
