Louise’s Story:

Fecal Incontinence

When I discuss incontinence with anyone and begin to tell my story about incontinence almost everyone assumes I have urinary incontinence. In fact I am 43 and I have suffered with fecal incontinence for 14 years now since the birth of my first child. I would really like to bring fecal incontinence out of the realms of 'taboo' and a subject anyone can talk about without feeling shame.

In 1997 I was a nurse and midwife when I had my first child. It was a difficult labour that ended in a forceps delivery. I had no idea how much that delivery would change my life. I sustained an extensive tear and was in a great deal of pain. Soon after my delivery I became aware that I was unable to control my wind and I seemed to be soiled all the time. I decided it was because of the tear and assumed it would get better.

At my post natal 6 week check I advised my doctor that I was 'having accidents' but she advised me it was early days and because my tear was so extensive I probably had a haematoma. I was embarrassed and decided to keep quiet.

The next five months were awful. I became reclusive and very depressed. I didn't even tell my husband, mum or friends, I was horrified. On the very few occasions I had gone out it had ended with my bowels emptying into my clothing and I was left feeling ashamed, alone and even more desperate. On one particular occasion my husband came home unexpectedly just after I had an accident. I was in tears and he was very concerned but I lied about why I was upset because I felt dirty. He sat with me and asked more questions His kindness and understanding helped me to share my secret with him – I was fecally incontinent.

The next day we visited our doctor and I was referred to the UK's leading Colorectal Hospital. I was diagnosed with a 60% effective anal sphincter. When my baby was 18months old I had an anal sphincter repair but sadly on the third day post operatively my wound burst open with a terrible infection. I had to wait 7 months for the hole in my perineum to heal up – it was awful.

My incontinence was worse than ever and because of a blood clotting disease it was deemed unsafe to perform a colostomy. Initially I felt depressed and dirty', I never felt attractive and intimacy was a thing of the past. When you think nothing can be done you feel so alone.

One day during a biofeedback session I was approached by a research nurse and asked if I would share my story with some nurses. I was very nervous and scared but they really appreciated it and it felt great. The research nurse then arranged a self help group and I was actively involved. We wrote a paper about the group which found that self help groups were the most effective tool in helping sufferers.

I have had incontinence now for 14 years and I have managed to turn my life around. I recovered from depression and started giving personal perspectives of living with incontinence to health care professionals at several UK universities.

In August 2008 we moved to Canada – something I never thought I would be able to do. This year I travelled to New Orleans and Chicago to give healthcare professionals my personal/professional perspective and I offer them diagnostic tools to help identify women at risk.

The very best part of giving lectures is that women have been identified in the community and helped.

My aim is to take away the taboo surrounding fecal incontinence and offer men and women sufferers the support they need and deserve. I can be contacted through The Canadian Continence Foundation: help@canadiancontinence.ca and want sufferers to know they are NOT alone.