New Pain Research: ‘You’ve got to keep going’

15 August 2019

New research published in the British Journal of Pain has looked into the experiences of people with Crohn’s and Colitis who suffer from pain, and the techniques they use to cope.

Undertaken by Louise Sweeney, whose PhD we are currently funding, the study involved interviewing people with Crohn’s Disease and Ulcerative Colitis about pain and the emotional and physical impact this can have.  

Within her interviews, Louise saw key themes about pain and Inflammatory Bowel Disease (IBD) emerging: ‘vicious cycles’, ‘finding solutions’ and ‘attitudes’.    

Often Crohn's and Colitis symptoms felt like a cycle of urgency, pain and fatigue, as well as participants feeling a cycle of anxiety linked to their pain. People within the study were aware they needed to break out of these vicious cycles to manage their pain in the long term. 

Those interviewed had often found their own set of strategies for managing their pain, which included short-term strategies such as diet and long-term strategies such as meditation.

Once you start making peace with the pain, it’s almost like you have more control of it.

Study Participant

Searching for a solution for pain had an emotional impact on many people and there was the sense of learning through experience and trying to search for something that worked.  

Within the study there were contrasting attitudes from interviewees, including defeat, tolerance and acceptance.  

Louise’s study provides an understanding of the experience of pain in IBD but also highlights the lack of treatment to manage this poorly understood and difficult symptom.  

This group of individuals with IBD demonstrate a resilient approach, tolerating daily levels of pain despite searching for adequate solutions. It is important to support patients in their ability to self-manage and negate risk of emotional distress by facilitating understanding of their symptoms and good therapeutic communication. Psychological intervention may be a helpful approach for patients experiencing pain and psychological distress.

Louise Sweeney 

Louise is part of a team at King’s College London, led by Professor Christine Norton in collaboration with Crohn’s & Colitis UK that is undertaking a 5-year research programme (IBD-BOOST) on pain fatigue and urgency in people with IBD.

They have developed an online self-help programme and will begin testing this in the autumn.

Louise’s study is a really valuable piece of work in highlighting the lack of treatments for pain management in IBD, as well as the significant emotional impact this symptom can have. We know that pain is a devasting and under-investigated symptom and that’s why this year we have launched the Pain Collaborative Research network to further our understanding. This will hopefully lead to better treatment options in the future and improved quality of life for people with Crohn’s and Colitis.

Helen Terry,
Director of Research, Crohn's & Colitis UK

Find out more about our Pain Collaborative Research.