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The experience of living with faecal incontinence

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VOL: 103, ISSUE: 14, PAGE NO: 46

Mary Wilson, PhD, MA, BSc, RGN, is nurse specialist in bladder and bowel health, Specialist Services for Bladder and Bowel Health, Westwood Hospital, East Yorkshire

Elaine McColl, PhD, MSc, BA, is senior lecturer in health services research and director of the Newcastle Clinical Trials Unit, Institute of Health and Society, Newcastle

Faecal incontinence, a symptom of many diverse conditions, is a taboo subject. It can cause people to feel stigmatised and socially unaccepted. However, little research has taken place into the perspectives and experiences of people living with the problem, its impact on their lifestyle and how they adapt. Likewise, little attention has been given to their help-seeking behaviour and disclosure of symptoms to health professionals, nor to subsequent intervention.

Faecal incontinence, a symptom of many diverse conditions, is a taboo subject. It can cause people to feel stigmatised and socially unaccepted. However, little research has taken place into the perspectives and experiences of people living with the problem, its impact on their lifestyle and how they adapt. Likewise, little attention has been given to their help-seeking behaviour and disclosure of symptoms to health professionals, nor to subsequent intervention.

Literature review
At the start of any chronic illness, many individuals feel overwhelmed and helpless, experiencing shock and depression. Although some people remain overwhelmed, others are able to achieve various levels of adaptation. Health professionals can assist patients' adjustment by helping to reduce their feelings of helplessness, build their confidence and self-efficacy (belief in their capabilities), and by encouraging them to work towards self-generated, attainable goals (Kline Leidy et al, 1990).

People with faecal incontinence may be reluctant to seek help because it tends to not be talked about publicly. They may feel that they experience it alone (Johanson and Laffery, 1996) and do not have the terminology to explain their problem to health professionals (Brittain et al, 2001). Even when advice is sought, faecal incontinence appears to be frequently given low priority by health professionals - the problem receives less attention than urinary incontinence (Addison, 2002).

Aims of the study
- To explore participants' perspectives on the impact of faecal incontinence on lifestyle and quality of life, how they responded to the experience of faecal incontinence and if they adapted and developed management strategies;

- To investigate their reasons for seeking help from health professionals, if they delayed this and why, and what they hoped to get from those whom they consulted;

- To learn about the nature of their disclosures to, and subsequent interaction with, health professionals about faecal incontinence.

In-depth guided interviews and constructivist grounded theory were used to collect and analyse our data.

A sample of 22 community-dwelling adults with faecal incontinence was made up of 11 individuals identified by nurses caring for them, 10 who self-referred in response to publicity material and one already known to the research team, with whom the initial interview topic guide was tested. Sampling was initially multivariational, with participants experiencing a diverse range of causes of faecal incontinence. Subsequently, aiming to fill the gaps in the emerging theory, we carried out theoretical sampling, until new data ceased to introduce fresh concepts.

Interviews were tape-recorded with the permission of the participants and transcribed verbatim. Written informed consent was obtained and ethical permission was granted by local research ethics committees. Transcripts were coded and thematic charts created to facilitate constant comparative analysis.

Findings and discussion
Five interdependent themes emerged:

- Impact of faecal incontinence on self;

- Response to faecal incontinence, including adaptation/maladaptation;

- Interaction with 'significant others' (for example, a partner/close relative/friend) and generalised others (those from the public domain);

- Positive/negative life direction;

- Interaction with health professionals.

Across all five themes, participants formed a dynamic continuum, from those who expressed the theme negatively to those who responded more positively. We gave the term 'overwhelmed' to the six individuals who clustered around the negative pole on all five themes, signifying the control that faecal incontinence held over their lives. We categorised another 11 participants, who to varying degrees responded more positively, as 'approaching mastery'. The remaining five, who were typically stoical and resigned to faecal incontinence, formed a mid-way group; we termed this group as 'accommodating' faecal incontinence.

The 'overwhelmed'
This group was not acustomed to living with the condition and reported frequent faecal incontinence. The majority of this group reported a sudden onset. They compared their inability to control defecation with that seen in infancy. Faecal incontinence reduced self-esteem and lowered confidence and mood:

'You just couldn't see anything but the black cloud. There was no positives at all ... I was just a child again.' (Male, aged 57).

The description of those overwhelmed by faecal incontinence supports and adds to the findings of others (Chelvanayagam and Norton, 2000). The participants in our study constructed life before faecal incontinence as a golden past, in stark contrast with their current negative experiences. Fear of loss of bowel control or actual loss led to a feeling that they were socially unacceptable and they demonstrated reclusive tendencies:

'We used to go out every weekend, walking, swimming - your life sort of changes, totally ... I'm a bit more - I suppose you call it - like a recluse.' (Male, aged 37).

Participants in this group were reluctant to make plans and showed little proactive investigation of management strategies, especially if these risked accidents in public. They looked to 'significant others' for care and support but their associated low mood increased domestic strain:

'I just don't seem to catch back up on my sleep, and everything then builds up on yourself and that's a knock-on thing, maybe for the day following. You wake up in such a bad mood ... I may have a real ratty day with my wife.' (Male, aged 37).

However, their significant others received little support because knowledge of the condition was kept within the family. The benefit of positive role models for those undergoing adaptation has been acknowledged (Sprangers and Schwartz, 1999). However, particularly for those overwhelmed by faecal incontinence, we found that role models were only perceived as effective if they were sufficiently similar in all characteristics considered by the individual as significant:

'... the girl I was in hospital with, she got a lot of the same symptoms as I did, and she's just had a colostomy put on, and she said 'oh if you have to have one done, don't worry, it's not as bad as you think it's gonna be.' But you see, she's in a happy marriage, she's been married for nearly 30 years or something and it's a different situation.' (Female, aged 38).

Arguably, if a role model who was sufficiently similar then relapsed, the effect could be negative.

Eight individuals who associated their faecal incontinence with health-professional intervention, either had been, or were currently, overwhelmed. Half of these attributed their faecal incontinence directly to adverse/unjust results of treatment that they felt they had not been warned about. The negative effect on adaptation of blaming others for their suffering is supported by existing research (DeGood and Kiernan, 1996).

'Approaching mastery'
This group displayed more acceptance of faecal incontinence, greater self-esteem and confidence. Those who had lived for longer with faecal incontinence, recalled 'black days' when they were 'overwhelmed' by it but revealed pride in subsequent adjustment:

'They really were black days - it destroyed our ... way of life for a long time, and we picked it up a little bit now because you have to get your mind right that you're gonna do things, you are gonna, to overcome it.' (Male, aged 57).

Although faecal incontinence could be unrelenting, members of this group found proactive strategies - often by trial and error - that they refined for future use. Sometimes the confidence they gained from adjusting to other conditions helped them to live with faecal incontinence:

'I can do it with my chest, and I'm gonna do it with my bowel.' (Female, aged 62).

Others who experienced milder symptoms moved towards mastery with less initial negativity.

Those approaching mastery required less assistance from significant others, who worked with them to deal with faecal incontinence, and reciprocating their support even if this risked faecal incontinence:

'When my grandson and granddaughter was dancing, I went to the theatre there and luckily it was a night time and I didn't want to go to the toilet. I was really padded, I was sat here but the toilet was there.' (Female, aged 49).

This is consistent with disability research that describes 'mutually supportive relationships' (Crisp, 2000).

Less negative in their outlook and generally more experienced in dealing with health professionals than the overwhelmed, members of this group were more assertive in getting their needs met.

Those 'accommodating' faecal incontinence
This group also experienced other chronic illnesses but their incontinence was more relenting than in those who were overwhelmed. Living in a 'comfort zone' of well-practised, relatively risk-free routines, they displayed greater optimism than those overwhelmed by faecal incontinence. If they predicted imminent loss of bowel control, they cancelled arrangements.

They also used faecal incontinence and other conditions as permission to be dependent and withdraw from everyday obligations. They appreciated assistance from significant others, making no reference to discordant relationships.

Despite previous negative experiences of health-professional intervention, they put their lives 'on hold', waiting 'in limbo' for further treatment:

'For the past four years it's meant that I haven't had a life with my kids ... I couldn't have a day out with them, I don't go swimming anymore ... whereas with a colostomy I could.' (Female, aged 44).

This reflects reliance on 'powerful others', (Wallston et al, 1978) and although this reliance, combined with stoicism, is reported elsewhere (Crisp, 2000), it has not been previously associated with faecal incontinence.

Interaction with health professionals
A sudden onset of faecal incontinence was generally associated with minimal delay in seeking help. However, it became apparent that a gradual onset, together with a lack of conviction that help was needed, could result in years of delay. Disclosure was easier with health professionals of the same gender, with whom participants were familiar. In other situations, they felt embarrassed and delayed coming forward:

'He's one of them real tall, good-looking blokes you know ... I did it in the end like but, er, to me it took me all my time.' (Female, aged 61).

For some, a same-gender preference continued after disclosure:

'I feel, no matter how good a doctor a man is, he can't understand what a woman goes through, you know, if they haven't had babies or miscarriages, problems with your bowel and things.' (Female, aged 48).

These findings support research by others such as Brooks and Phillips (1996).

The stigma associated with faecal incontinence caused reticence in seeking help for incontinence management. A community nurse was not aware of one participant's problem with faecal incontinence but knew he had a spinal injury and did not ask about bowel and bladder control. After visiting when his faecal incontinence was apparent she referred him for continence assessment. Initially, he was surprised when a female nurse visited but her manner gave him 'permission' to discuss his condition:

'That initial meeting ... broke all barriers ... if she pussyfooted around the problem, I would have probably adopted that same attitude ... (but) she took (away) all the inhibitions ... For a woman to come and talk to a chap on that sort of thing, yeah, it was a rum subject but she had obviously done it long enough.' (Male, aged 57).

However, others described instances where disclosure was blocked:

'I'd had such a bad attack of diarrhoea and covered all the bed and everything ... (They) didn't ask 'why has it happened, how do you feel?'' (Female, aged 54).

This left this participant feeling that nothing could be done about her incontinence. Others felt let down when advice was not forthcoming:

'(The community nurse) didn't really sit me down and say right, look you can make things easier for yourself by doing that or that ... (She said) 'you seem to be coping alright - we'll leave you to it'. I could have really done with more tips on how to cope.' (Female, aged 38).

However, the provision of the appropriate continence products, including cards indicating that the bearer requires the urgent use of a toilet and information regarding Radar toilets for people with disabilities, encouraged adaptation and provided a favourable experience of interaction with health professionals:

'You know the (Urgent) card you gave me - that's brilliant 'cos sometimes if I've been walking past a shop and I know that there isn't a toilet just where I am, I've gone in sometimes and said 'look I'm suffering with a bowel problem' and I show her the card and 'oh of course you can use the toilet'. ' (Male, aged 37).

The participants also gave their perspective on receiving hands-on care. Although a participant with chronic health problems normally lived independently, when he was in hospital the nurses tended to 'take over' if he was incontinent:

'(They) have this very ... unpersonal approach with dealing with you; a bit like an automaton 'do that, do that', and you'll be sort of, you know, suited and booted before you know what's happened - erm - and I think they don't take the time to think, well, how's that person feel about, being pulled about, like sort of, at 200 mile an hour. And it's embarrassing you know, when you've got other people in the ward around you.' (Male, aged 28).

While this patient was in hospital a 'whole stack of pads' was left next to him. Although initially unaware of this, he felt stigmatised and embarrassed when he realised they were there.

Those approaching mastery chose to be more specific in their requirements, developing expertise in self-management, using health professionals as a resource and accessing them only when necessary:

'I started having phosphate enemas and all the rest of it ... I had the scenario again about 'well you can't do this and we're going to do it for you' and it was a sort of constant sort of battle with people ... I'm going to manage this, on my - as well as I can. I mean, if I need help, then, you know, I'll ask for it.' (Male, aged 28).

Informed consent to treatment
Participants described how - especially as novices to using health services - they had accepted what surgeons proposed, often unaware of possible complications, including faecal incontinence. It was unclear if the explanation was insufficient or inappropriate, although some participants did receive additional counselling before surgery:

'A nurse what came in and explained what was going to be done ... and showed me the leaflet and left a couple.' (Female, aged 61).

For others, the consequences were not revealed until after the event:

'(Faeces) started just running away from me and I was absolutely devastated ... and the nurse said 'didn't you realise this would happen?', and I said I had no idea. She said ''oh yes ... because they've completely removed your colon''.' (Female, aged 38).

Participants often learnt as a result of experience:

'If something else is done to me, I want to be in control, and I want to make me own decision sort of thing, or discuss it and say well look, what could go wrong after that?' (Male, aged 37).

Thorne (1993) identified novices to accessing health services as being passive recipients, displaying childlike naive trust, which then matures to disenchantment. This observation was substantiated by our research. As nurses often spend more time with patients who see them as more socially accessible (Brooks and Phillips, 1996; Thorne, 1993), they are well placed to act as advocates, discussing future interventions and ensuring that they are understood.

Recommendations to healthcare professionals
Kline Leidy et al (1990) advise that the approach used and the support offered should be tailored to the ability of an individual to deal with the threat posed by a chronic condition. Following our study, we recommend that the continence care offered should be:

- Consistent with clinical need;

- Appropriate to the individual's psychosocial response to faecal incontinence (the health professional should identify where the individual is on the continuum of adaptation).

We recommend that health professionals give patients overwhelmed by faecal incontinence:

- Continued support;

- Realistic expectations and advocacy;

- Assistance in the setting of self-generated, short-term, achievable goals;

- Practical solutions, including continence products, 'Urgent' cards and information concerning Radar toilets;

- Discussion of the possibility of negative as well as positive treatment outcomes;

- Support for significant others.

Those who are accommodating faecal incontinence should be provided with significant treatment milestones to encourage further proactive adaptation.

As patients who are approaching mastery show varying levels of adaptation, health professionals need to provide:

- A resource that is appropriate to the needs of the individual;

- An informed choice of what is available.

This report has outlined how people with faecal incontinence can be represented on a negative to positive dynamic continuum of responses. It has demonstrated how health professionals can facilitate a positive transition, not only by being conversant with clinical continence promotion, but also by tailoring interventions to the individuals' psychosocial responses to faecal incontinence.

The work reported in this paper was carried out as part of Mary Wilson's PhD research. It was funded by a fellowship from the Northern & Yorkshire R&D Executive. Additional funding support was provided to Mary Wilson by Guy's Hospital Nurses' League and by Wolds Research Network (WoReN). The financial support of all of these bodies is gratefully acknowledged. However, the views expressed in this paper remain those of the authors alone.

This article has been double-blind peer-reviewed.

For related articles on this subject and links to relevant websites see

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