World IBD Day: Creating lasting change
- Written by: Phoebe Sheppard — Crohn's & Colitis UK — Senior Policy and Public Affairs Officer
- Published: 19th May 2026
Together, we can create lasting change for everyone living with Crohn’s or Colitis.
More than 50,000 people in Scotland – around one in every 103 – are living with Crohn’s or Colitis, with over half a million people affected across the UK. This is almost double previous estimates, and Scotland now has the highest prevalence of Inflammatory Bowel Disease (IBD) anywhere in the UK.
For those living with the conditions, no two days are the same. Life can be challenging, unpredictable and exhausting. But having access to the right care, at the right time, can make all the difference.
Yet too often, people’s experiences of care vary widely. Thousands face delays in diagnosis and treatment, leading to avoidable complications, preventable hospital admissions and, in some cases, emergency surgery. These are all pressures that could be reduced with the right investment and planning.
That’s why this World IBD Day at Crohn’s & Colitis UK, we’re sharing real stories to help reshape how the world sees these conditions. We want to amplify the voices of those living with the Crohn’s and Colitis and highlight what care really feels like at every stage of the journey. Jenna, a student in Glasgow, has shared her experience:
“Looking back, living with Crohn’s hasn’t been my biggest challenge. It’s the lack of joined-up care and having to navigate a system that tells you you’re fine when you know you’re not.
Ultimately, it’s the feeling of not being heard.
There’s much more to do when it comes to coordinated care for people living with Crohn’s or Colitis. We need dieticians, mental health support and IBD nurses to work together because, as my experience shows, misalignment can really cause big gaps in care that can make daily life difficult. That’s what leaves you feeling isolated and misunderstood.
Being treated like a person living with a chronic illness, someone who understands their own body, rather than just another patient on a list brought a huge sense of relief. It’s something I wish for everyone living with Crohn’s or Colitis.”
You can read more of Jenna’s experience here: “Ultimately, it’s the feeling of not being heard.” – Jenna’s story
Find out more about World IBD Day and download our resources here: https://www.crohnsandcolitis.org.uk/world-ibd-day
Make sure you’re following Crohn’s & Colitis UK across social media channels and get involved by signing up to the charity’s campaigns network.
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