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P610. Life experiences of patients with perianal Crohn's fistulae


Around one third of patients with Crohn's disease (CD) develop perianal fistulae. The associated morbidity of CD and its treatment can have profound effects on patients. Positive associations have been demonstrated between psychosocial distress and changes in Crohn's disease activity index scores [1,2]. The inflammatory bowel disease questionnaire (IBD-Q) has been used to assess quality of life (QoL) of Crohn's fistula patients on anti-TNF therapy [3]. However, neither the IBD-Q nor the Perianal Disease Activity Index (which only covers clinical aspects) explores issues relating specifically to perianal fistulae. This study sought to gain an understanding of the experience of perianal fistulae for Crohn's patients.


Crohn's fistula patients were identified from outpatient clinics. 16 semi-structured interviews were conducted with consenting patients. Interviews were transcribed verbatim, and transcripts analysed independently by two researchers using a thematic analysis approach. Themes were identified relating to the experience of living with anal fistulae.


Central themes were: diagnosis (relief at getting a diagnosis which was explained to them), decision making (patients involvement in their treatment plan), coping strategies, acceptance, body image, stigma, information, personal relationships and relationships with health care professionals, and social and work related issues.

Stigma at home/work was one of the important factors reported by all patients, as was the importance of differentiating between intimacy and companionship when exploring personal relationships. Relationships with health care professionals played an important role, and although patients felt they were given sufficient information about treatment options, in an emergency situation this information was often heard but not fully comprehended until the situation reverted back to the elective setting. Known phenomena related to CD such as “toilet mapping” was different for patients with fistulae due to the added need for adequate washing facilities to enable effective hygiene following defecation.


Crohn's related perianal fistulae are a major cause of distress and greatly impact on patients' lives. The study findings have revealed new insights into specific issues related to living with perianal fistulae. These issues may lead to emotional, social, work-related and financial restrictions which should be appreciated by health care professionals. Further research is needed to improve our understanding of the impact of anal fistulae on patients' QoL and develop appropriate assessment tools designed specifically for this group of patients.

1. Mahadev S, Young JM, Selby W, Solomon MJ (2011), Quality of life in perianal Crohn's disease: what do patients consider important?, Dis Colon Rectum.

2. Gerbert B., (1980), Psychological aspects of Crohn's disease., J Behav Med.

3. SC Ng, S Plamondon, A Gupta, D Burling, M A Kamm., (2009), Prospective assessment of the effect on quality of life of anti-tumor necrosis factor therapy for perineal Crohn's fistulas., Aliment Pharmacol Ther.

  • Written by:

    N.A. Yassin1, L. Dibley2, H.-L. Sim1, R.K.S. Phillips1, A.L. Hart1, C. Norton2, 1St Mark's Hospital, and Academic Institute, London, United Kingdom, 2King's College London, Florence Nightingale School of Nursing and Midwifery, London, United Kingdom