Victoria Spillane
Interim Chief Opertating Officer
Inflammatory bowel disease (IBD) isn’t confined to the gut. For many, symptoms appear throughout the body long before they’re recognised.
IBD, including Crohn’s Disease and Ulcerative Colitis, is commonly understood as a gut condition. Yet for many people living with IBD, symptoms extend far beyond the digestive tract.
More than digestive symptoms
Extraintestinal manifestations, known as EIMs, occur when inflammation affects other parts of the body and can involve joints, skin, eyes, liver, bones and overall energy levels. As awareness grows, it’s becoming increasingly clear that many people aren’t just managing bowel inflammation but a systemic whole‑body condition that impacts daily life in complex, often unexpected ways.
EIMs can arise at any stage of the disease. For some, symptoms such as joint pain, fatigue, mouth ulcers or eye inflammation/ulcers may appear long before an IBD diagnosis is made. For others, they persist during active disease or continue even when gut symptoms appear well controlled.
Because manifestations often present outside gastroenterology clinics, they may be treated in isolation. This disconnect means many people don’t realise their symptoms are linked to IBD, leading to delayed diagnosis, fragmented care and increased physical, emotional and psychological burden.
Need for whole‑person care
Living with IBD isn’t solely about managing flare‑ups or periods of remission. It involves navigating uncertainty, understanding a broad range of symptoms and advocating for coordinated healthcare that reflects the full impact of the condition.
Effective management requires a multidisciplinary approach, where gastroenterology teams work in partnership with rheumatology, dermatology, ophthalmology, primary care and allied health professionals. Recognising EIMs as an integral part of IBD allows for earlier intervention, more appropriate treatment pathways and better long‑term outcomes for people living with the condition.
Understanding IBD means looking beyond the bowel and recognising the person behind the diagnosis
Awareness empowers people
At Crohn’s & Colitis Ireland, we regularly hear from individuals who are surprised to learn that symptoms they’ve lived with for years are connected to IBD. Education is empowering.
Understanding IBD as a systemic condition helps people seek timely support, communicate more effectively with healthcare providers and feel validated in their lived experience.
Understanding IBD means looking beyond the bowel and recognising the person behind the diagnosis.
