Your say: Have you experienced a perianal fistula?

08 June 2018

We want to hear from people who have experience of living with perianal fistula about what it is like to live with the condition and their experience of current drug treatments and supporting care. 

Your experiences will help inform our submission to the National Institute for Health and Care Excellence (NICE) which is currently considering whether to recommend a new therapy for use in England and Wales. 

The therapy currently being appraised is called darvadstrocel. It has been developed to treat complex perianal fistula in adults with non-active/mild Crohn’s Disease that have not responded to conventional (e.g. immunosuppressants/antibiotics) or biological therapies (e.g. inflixamab/adalimumab). The treatment, for consideration, involves an injection of stem cells into the fistula under anesthesia. A similar call for evidence was made last year as part of the exploratory part of the appraisal.

We are not aware of any patients receiving this therapy in the UK, and therefore we are not expecting to receive responses from patients who have used the new treatment. Instead, and just as importantly, we are asking for your experiences of living with the condition to help inform committee members appraising the treatment, who will likely have limited knowledge of this condition and its impact on a day to day basis.

If you are currently living in England and Wales and are personally affected or a carer, please email us with your experiences:

  • What is it like to live with perianal fistula?
  • What you think of current treatments and supporting care available on the NHS? What impact have current treatment(s)/surgery had on the closure of your fistula, disease activity, continence and your quality of life? (please specify the treatment(s) you received)
  • What support, if any, you require from others/services on a daily basis to live with your perianal fistula. If you are a carer for someone with this condition, what do you experience when caring?
  • If current treatments (immunosupressants/biologics/supporting care/surgery) have been unsuccessful, what has been the impact on your quality of life?
  • Are there any areas of services or treatments where your needs are unmet?
  • Do you think there are the advantages/disadvantages to the new treatment?

Crohn’s & Colitis UK would really appreciate it if you could email your experiences to by Wednesday 15 June.

Please feel free to share as little or much of your experience as you wish to. We would like to use some quotes in our submission, to illustrate the points we make, but will not use any names unless you indicate you would be happy for us to do this.