Incontinence in people with IBD

What is this research looking at?  

Faecal incontinence is a major concern for people with Inflammatory Bowel Disease (IBD).  Incontinence can be caused by the unpredictability, frequency and urgency of needing to go to the toilet, and can be damaging to people’s quality of life.  Fear of incontinence can sometimes be just as damaging to quality of life as the incontinence itself. 

Many people find incontinence embarrassing to talk about, even among loved ones. There is a lack of quality information about how many people with IBD suffer faecal incontinence – and also about their experiences and whether their needs are being met. 

The aim of this piece of research is to assess the prevalence of faecal incontinences among people with IBD, and whether the NHS's standard questionnaire about faecal incontinence (called ICIQ-B) is covering the specific experiences faced by  people with IBD. The study also aims to understand how people manage their faecal incontinence, as well as any services that they may need. 

The grant will fund a survey of 10,000 members of Crohn's and Colitis UK, using a paper or online questionnaire. 

Researchers hope to receive 4,000 completed surveys. They will then attempt to engage 20 people who have completed surveys for a more in-depth interview. The aim would be to get views and experiences from a range of people with IBD. 

Conclusions: 

The researchers found that at least one in four people with IBD experience faecal incontinence. This distressing symptom is most likely to occur during a flare-up, but can also happen in remission. The study identified that faecal incontinence is more likely in women, people who have had anal or colorectal surgery, and people aged between 51 and 60. Faecal continence is equally likely in Crohn’s Disease and Ulcerative Colitis, but may happen more frequently in Ulcerative Colitis. Factors such as stress and diet were reported to make the symptom worse. 

Faecal incontinence was found to have a major impact on people’s day-to-day lives. Those who had a lack of bowel control reported having a worse quality of life and social functioning, with the possibility of a bowel accident frequently on their minds. The study identified a need for healthcare professionals to proactively ask patients about any faecal incontinence, as people are often too embarrassed to talk about this during clinical consultations. 

What do researchers think this could mean for people with IBD? 

The researchers want to determine the prevalence of faecal incontinence in IBD.  They hope that the research will help them to understand the experiences and concerns of people with IBD - which could then lead to future research into how people with incontinence can be supported. 

Who's leading the research: Prof Christine Norton, King's College, London
Our funding: £109,173 over 18 months
Official title of the application: “The Continence in IBD Study.”
Tags: incontinence