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IBD-BOOST: Living well with Crohn’s and Colitis
Introduction
Previous research has found that difficulties with pain, fatigue and bowel control are top concerns for people with Inflammatory Bowel Disease (IBD), even when in remission. Many patients have pain, fatigue, and urgency together, similar to other long-term conditions with multiple symptoms. Therefore, they must co-exist, but we know little about symptom clusters and how they inter-relate.
What is the purpose of the study?
The purpose of our study is:
(1) To find out how many people with Crohn's or Colitis experience fatigue, pain and urgency
(2) To find out how many want help managing these symptoms. We are also testing new ways of managing these symptoms (not part of this survey).
Who is organising and funding the research?
Professor Christine Norton is leading an experienced team of doctors, nurses and researchers. The study is being funded by the National Institute of Health Research (NIHR) through their Programme Grants for Applied Research. Meet the core team below:
Recruitment to this study has now closed so you cannot now take part.
If you have any questions, please do feel free to contact the research team at ibd-boost@kcl.ac.uk and/or 020 7848 3318.
If you need support for physical or mental health don’t suffer in silence, get help. You could:
- Contact your local IBD service at your hospital (many have a Helpline)
- Contact your GP
- or call the NHS non-emergency number: 111 (24 hours a day) www.nhs.uk
Support with your IBD
Crohn’s & Colitis UK
Support is available from your care team and organisations like Crohn's and Colitis UK if you need it. www.crohnsandcolitis.org.uk
Crohn's & Colitis Helpline
Tel: 0300 222 5700
Email: helpline@crohnsandcolitis.org.uk
(9am to 5pm, Monday to Friday (except English bank holidays))
Support for mental health
If you are concerned about anxiety or depression, these helplines can offer expert advice.
Mind
Promotes the views and needs of people with mental health problems.
Website: www.mind.org.uk
Infoline: 0300 123 3393 (Mon-Fri, 9am-6pm)
Email: info@mind.org.uk
Samaritans
Confidential support for people experiencing feelings of distress or despair.
Website: www.samaritans.org
Phone: 116 123 (free helpline 24 hours a day, 365 days a year)
Email: jo@samaritans.org (response time: 24 hours)
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Helpline Service
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
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Providing information about Crohn’s and Colitis.
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Listening and talking through your situation.
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Helping you to find support from others in the Crohn’s and Colitis community.
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Providing details of other specialist organisations.
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 - 9am to 5pm, 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.