Summary: Faecal incontinence affects relationships, employment and self-esteem.
Author: The author is a registered nurse and specialist practitioner in sexual health. Her first degree is a BSc in sexual health. She is a lecturer in adult nursing.
This personal account of living with faecal incontinence provides a rare insight into the direct effect that the problem has on self-esteem, close relationships and employment and family life. It is evident from this case study that nurses require advanced assessment and management skills to help people live with a long-term condition that often goes unrecognised.
I am 47 years old and have been married for 28 years. We have three children, aged 23, 21 and 12.
I distinctly remember, after the forceps delivery of our first child, experiencing intense pain in my back passage when my perineum was being sutured. The doctor apologised and told me he had to examine my back passage ‘to make sure I haven’t stitched it up’.
After the birth of our third child, I noticed that when my bowels opened it was difficult to wipe myself clean and, occasionally, I would soil my underwear. I felt sure that, by the time I had my postnatal examination, everything would be back to normal. At the postnatal check, the faecal incontinence was no worse so I did not mention it.
I went back to work nine months after the birth. I often skipped breakfast and did not eat until mid-morning. Most days, I would feel the need to defecate after I had eaten; this was when I initially realised there was no improvement. I struggled to clean myself and felt uncomfortable as my underwear was soiled. My skin at the top of my bottom became sore and started to split. I was always worried that other people would smell the odour. Eventually, I had to improvise. I made toilet wipes into an anal plug and wore panty-liners all the time.
Over time the faecal incontinence problem became increasingly difficult to cope with. I was successful in applying for a post that required me to travel. I had to pack extra toilet roll as well as my own towels and extra underwear. I had to plan everything I did. I noticed I had no control over gas leakage; this was not only embarrassing at home but also at work and socially. I felt disgusted with myself and started to feel helpless.
My family and friends noticed a difference in me. One evening, my husband encouraged me to dress up to go out. I had had my bowels opened in the morning and stopped leaking mid-afternoon. I had another bath and got ready. As I was cleaning my teeth I felt like I needed to go – I did and my bowels opened. I was struggling to clean myself so decided to have another bath. I sat in the bath and the water suddenly became discoloured with faeces. I was horrified. I ran upstairs and tried to shower off the smell. I couldn’t satisfy myself that it had gone. I didn’t go out and cried myself to sleep in the spare room after cleaning up my mess.
This went on for approximately four years before I went to see my GP. He was very supportive and said he would refer me to a specialist.
I felt so relieved and, for the first time, I felt able to discuss it with my husband. He was very supportive and said he would come with me to see the consultant. At first I wasn’t sure but decided that, as I had tried to manage this alone and had not been successful, now was the time to accept help.
The initial consultation was a very positive experience for me. I cried as I talked to the specialist and my husband listened. The consultant explained what could have caused the problem (obstetric injury) and that I would need further tests. He did not appear surprised that I had lived with faecal incontinence for this length of time and reassured me that most women in my position would do the same. My husband was upset when he realised the depth of the problem and he agreed to come with me to every consultation.
I had surgery in 2003 and this improved the faecal incontinence but I did not feel better. My GP diagnosed depression and I was prescribed antidepressants and beta-blockers. I was experiencing severe anxiety attacks and becoming paranoid. I had to take sick leave from work, I lost two stone in weight, I lost concentration and I did not want to leave the house.
The depression eventually lifted and I felt well enough to go back to work with a maintenance dose of antidepressants and the support of my family. However, after 15 months, the faecal incontinence started to get worse again.