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.
Introduction
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.
Case Study
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.
The GP referred me back to the consultant and we discussed a trial of a neurostimulator to see if it improved the problem. The trial was a success and, in June 2007, I had a permanent one fitted after the PCT agreed the funding.
The turning point was attending a support group. This was organised by the hospital for patients who had an implant or were considering one. The people who attended were predominantly women. I listened to people share their experiences of living with what I realised was an unseen disability, how they coped and how they overcame their problems. I discussed how the worst experience for me was the loss of the physical side of our marriage. I learnt that many of the women were experiencing the same feelings or, even worse, it had resulted in divorce.
Although the implant had significantly improved the quality of my life, I had experienced about eight episodes of chronic diarrhoea with no warning at all. I began to drink more alcohol and this was becoming a coping mechanism.
Although the faecal incontinence had considerably improved, I still felt dirty and I began to suffer with urinary incontinence and needed to wear pads. The depression set in again. My GP increased my antidepressants and was also very supportive. He agreed that my husband and I would benefit from talking to someone about the effect faecal incontinence was having on our relationship. He also prescribed oxazepam as I was suffering from severe anxiety attacks; they were so severe that, on one occasion, I was admitted to hospital overnight. I was exhausted and could not work.
I have now accepted that I have faecal and urinary incontinence. Although the faecal incontinence has improved since having the implant fitted, it has not gone away and therefore I have to learn to live with it. At the most recent hospital follow-up, I was prescribed suppositories to insert after my bowels opened to see if I could have my bowels open again and reduce the problem.
Recently, I agreed to meet my husband in America; I paid for the holiday as a surprise for his 50th birthday. The thought of the long-haul flight and the faecal incontinence terrified me. I decided to take laxatives for two days before the journey and stayed in the house for 48 hours.
This precision planning has enabled me to swim regularly one morning a week after taking the suppositories. Once I have defecated, I feel confident enough to go swimming with the aid of an anal plug. I shower and, when I return home, eat before driving to work in case I need to defecate again.
Sadly, in recent months, my condition has deteriorated and I am now waiting to go into hospital for the formation of a stoma.
Clinical’s View
Mr Edward Kiff, FRCS, ChB, MB, MD is consultant surgeon at the University Hospital of South Manchester.
The author of this article describes her experience of faecal incontinence and its effect on all the other aspects of her life.
All of us move our bowels but, perhaps as a result of potty training, we grow up believing that defecation is an unmentionable subject, something that has to be kept private. We have no polite vocabulary for it and, consequently, when it does not work properly, it is very difficult to describe it.
If you are incontinent of faeces, the social consequences are immense. Other people’s reaction to a smell or brown discolouration would be exactly what you would expect. It is because of this that patients with faecal incontinence restrict their lives in an attempt to cope with it.
The author describes in detail the things that she had to do to try and cope and the effects that faecal incontinence had on her. There is nothing different about her. Her experience is entirely typical of patients with faecal incontinence.
As nurses and doctors, the one thing we must learn to do is listen to patients when they are trying to tell us what their problems are and, when there is any suggestion of continence problems, to learn to ask specific questions to bring it out into the open.
Much incontinence relates back to the trauma of childbirth, so any patients with urinary incontinence or uterine prolapse should be asked about their bowel function. A proportion will have incontinence but they will not have told you because they have no vocabulary and they are embarrassed about it.
Faecal incontinence can be managed. People’s lives can be improved, as there are different treatments available that can help. Even when the problem cannot be cured, being able to talk about it and being able to get what assistance is available is a significant benefit.
You will see from the author’s story that there can be several ongoing problems, but you will also appreciate the improvements she has been able to make in her life as a result of being allowed to discuss these issues.
