Crohn's & Colitis UK wants to make sure that more people are empowered to live well with Crohn's Disease, Ulcerative Colitis or other forms of Inflammatory Bowel Disease (IBD).
Survey: What does Self Management mean to you?
This means people being supported to look after their emotional wellbeing as well as managing their symptoms.
The Policy, Public Affairs and Research team are embarking on a project on self-management for IBD, informed by patients, clinicians, existing research and other organisations working in this area. As part of this, we are aiming to develop a position statement on self management. We want to find out what the term 'self-management' means to people with IBD and what kind of support people need and want in order to self-manage their condition.
We want to start by understanding what good self-management looks like for people living with IBD around the UK. To help provide some baseline information we have created a short survey aimed at people with a diagnosis of IBD. The survey is anonymous and takes no more than 5 minutes. It closes at the end of September.
This survey is an opportunity for people to tell us about their experiences;
What does self-management mean in your life?
What support have you received from health professionals and services?
What changes would you make to the support available?
We are asking people to think holistically about what helps them to cope and enjoy life, not just the medical treatment they receive. Even if you have never heard of the term ‘self-management’ or you are not sure what it means in practice, we would urge you to share your views. This information will be vital to help Crohn’s and Colitis UK to understand what it takes to manage IBD.
This is a UK–wide project, but if you live in Scotland and would be interested in taking part in a focus group in September or October in Glasgow to support some work being taken forward by Scottish Government to improve self management support for people living with IBD, there is the option to leave your details at the end of the survey.
For people in other areas, there will be a number of other opportunities to contribute to this project as it progresses and we will keep people updated via social media and the Crohn’s & Colitis UK website.
Read our latest news
Catch up on the latest news from Crohn’s & Colitis UK
Helpline Service
Temporary closure - 10/06/2026
Our Helpline will be closed from Wednesday 10 June and will reopen at 10am on Monday 15 June.
We may be closed but we have lots of information here on our website.
If you need urgent medical advice you can call NHS 111 or in Northern Ireland phone your local Phone First. In an emergency call 999 or go to your nearest A&E.
If you need emotional support the Samaritans are available 24 hours a day, 7 days a week on 116 123.
We know it can be difficult to live with, or support someone living with Crohn’s or Colitis. But we’re with you. We can give you the right information and support at the right time.
We’re here for everyone.
How Can We Help?
- We can help you understand Crohn’s and Colitis
- Listen and talk about living with IBD
- Help you connect with others in the Crohn’s and Colitis community
- Give you contact details of specialist organisations
- We can support you to live well with Crohn’s or Colitis and provide up-to-date, evidence-based information
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 10am to 3pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.