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.
End of page.
You may also like:
With the ALISS Customisable Map Tool, organisations can share info about community resources in ways that work for the people they support.
Continue readingIrene Mackintosh, CEO at Mhor Collective shares highlights and hopes for rights in a digital age.
Continue readingIn her latest TFN column, our Chief Officer Sara Redmond reflects on the proposal to collapse Scotland's 14 regional health boards into two.
Continue readingWhen we listen to lived experience, we create better resources, challenge assumptions and help create safer communities for everyone.
Continue readingGozie reflects on supporting citizen engagement, digital inclusion and hopes for the future.
Continue readingDCP member and Project Co-ordinator Esther Misajel shares Pachedu's journey towards digital inclusion.
Continue readingChris Mackie, Director of Digital, reflects on what ALISS has achieved so far this year and shares what is still to come.
Continue readingAt the ALLIANCE and beyond, true and meaningful policy reform means turning people's experiences into lasting action on the ground.
Continue readingGLP-1s can transform health but without adequate wraparound support, weight loss may come at the cost of nutrition, muscle and wellbeing.
Continue readingSheila Duffy, Chief Executive of ASH Scotland, is appealing for support for proposals to restrict tobacco, vapes and nicotine products.
Continue readingBilly McClean reflects on why SCIC26 offers a vital opportunity to learn together, share what works, and shape the future of integrated care
Continue readingTo mark the ALLIANCE's 20 year anniversary Paul Okroj reflects on the importance of supported self management.
Continue readingTo mark Scottish Learning Disability Week (7 - 13 September), Bruce Adamson reflects on this year's call to action.
Continue readingIn her latest TFN column, our Chief Officer Sara Redmond reflects on the current state of social care in Scotland.
Continue readingKicking off September for the ALLIANCE's 20 year anniversary, Grace reflects on the Self Management Programme
Continue readingSara Redmond, ALLIANCE Chief Officer, on the priorities for 2026's Programme for Government.
Continue readingSandra Auld reflects on the ALLIANCE's people focused impact, collaboration, lived experience, campaigns and lasting change in Scotland.
Continue readingMark shares his experience with gambling harms, and how this intersected with the launch of the ALLIANCE's ScotRGH programme in 2020.
Continue readingProfessor Anna Glasier celebrates 20 years of the ALLIANCE and it's vital role in shaping the Women's Health Plan for Scotland.
Continue readingSara Redmond, ALLIANCE Chief Officer, on the challenges faced by community-led health organisations in delivering prevention.
Continue readingAnnie shares her experience of youth politics, and how SAFE has helped her make connections and makes sense of the world of politics.
Continue readingChloe Craig reflects on how we have helped connect Scotland’s lived experience voice to conversations happening beyond our borders.
Continue readingDr Irene Oldfather reflects on two decades of growth, collaboration, and person centred impact across Scotland and beyond.
Continue readingDisabled people are some of those who suffer most in crises but are ignored in planning. Our 6-step model builds justice throughout.
Continue readingMaisie Peebles shares her experience working with Aberdeenshire Public Health Team on a ‘digital conversations’ project.
Continue reading