N27 Living well with IBD; An online survey from the UK

RadfordBSc- MSc- PGCert- PhD student, S.(1)*;Sawyer, R.(2);

(1)Nottingham University Hospitals NHS Trust, NIHR Nottingham Biomedical Research Centre- Gastrointestinal and Liver disorders, Nottingham, United Kingdom;(2)The Bottom Line IBD, The Bottom Line IBD, London, United Kingdom;


Chronic disease, such as inflammatory bowel disease (IBD), is a major cause of health problems in the U.K. Finding ways to best serve chronically ill patients is amongst the most important challenges facing the health care system. In order to better understand how to best support patients with IBD we need to understand what is important to them. The aim of this survey was to investigate the opinions and experiences of people living with IBD in relation to what they think are the most important factors of living with IBD and what it meant to live well with IBD.


An online survey, using Microsoft forms was created. Participants of any age or gender who were living with IBD were invited to take part via invitations and advertisements through social media (Twitter). There were three questions asked with free text responses to enable us to gather in depth data relating to personal experiences.


45 responses were collected anonymously via the online survey. Symptom burden was reported by 42 participants to be the most impactful aspect of living with IBD, impacting on work, education, social and leisure activities as well as sex and intimacy. Whilst 26 participants reported that ‘living well’ with IBD was to achieve complete symptom resolution, more participants spoke about having manageable symptoms without fluctuation. Achieving a ‘normal’ level of daily activity was important to participants.


This survey found that most patients focus on symptom resolution or better symptoms management when considering living well with IBD. Patients report that the most impactful aspect of IBD is managing symptoms alongside other daily tasks such as work, education, social and leisure activities. Further exploration in order to better understand the magnitude of symptom resolution that would be acceptable or preferable for people living with IBD is warranted.