Introduction: the Individual Behind the Diagnosis
There are many routes to becoming a patient with faecal incontinence (FI), many aetiologies of the dis- order, and many personal histories. The “meaning”
of the FI will be different for each patient, and his or her way of managing it will depend not only on aeti- ology but also on a number of personal, social and medical factors. Is the FI secondary to a medical or surgical mishap, or is it the by product of a life-sav- ing surgical resection, an “act of God”, or an “act of man”? Has the FI been with the patient since child- hood, and has he or she developed coping strategies;
or is it of recent onset and as yet “new”, foreign and unmanageable? What medical support is available to the patient? What emotional support–from family, partner, friends and work associates–is available? Is the partner supportive, or resentful and disgusted?
What habitual defence mechanisms do, the patient use in order to deal with adversity, and are these mechanisms overall successful or counterproduc- tive?
These are but a few questions we need to ask each time a patient with FI presents in the clinic. In other words, beyond the generalisations applying to
“patients” with FI lie individual men and women, boys and girls, each with his or her own personal, family, medical, psychological and social histories.
What applies to one patient or what works for a par- ticular patient may not apply to or work for another.
Development of Bladder and Bowel Continence
Development of bladder and bowel continence is intimately tied up with the development of the child and his or her role as a competent human being.
Freud wrote about the power, pride and control of the little prince on the potty: “His Majesty the Child”
[1]. The development of continence in a child is an important developmental step and is praised and rewarded throughout cultures. A crucial part of the child’s development is the development of a sense of
self and the boundaries between “me” and “not me”.
Children learn that defecating in the wrong place (pants), at the wrong time or in public is punished or is the cause of humiliation or mockery, and that there is pervasive disapproval of incontinence. Even the word incontinence is linked with loss or lack of control, with phrases in common parlance such as
“emotional incontinence” or “verbal incontinence”.
Very seldom, or perhaps never, is incontinence of any sort seen as having any positive connotations.
As we grow older, the pleasurable sensations of defe- cation are increasingly kept private [2–4]. Both in the personal realm and in the social realm, defeca- tion and faeces have become private and imbued with shame and embarrassment [5–9]. Incontinence is associated with negative images–of the mentally unwell, the learning disabled, or demented elderly patients.
We also know that secondary enuresis or encopre- sis, i.e. the development of enuresis or encopresis after the achievement of continence, is often associ- ated with emotional or physical trauma in childhood.
So it should not surprise us that even when there is an obvious physical aetiology for FI, this is some- times exacerbated by psychological factors and can be (at least partially) ameliorated by treatments that address the patient’s psychology.
Stigma and Quality of Life
People with FI have been found to live in a restricted world, often describing it as being similar to impris- onment. The limits to their world are often dictated by access to toilets, the need to carry a change of clothing with them at all times, and attempts to con- ceal the problem from family and friends alike.
There are few studies of people’s experiences of living with FI, but one study of teenagers with FI [10] found that the powerful social rules associated with this area of life mean that families of teenagers with FI faced public distaste, embarrassment, ridicule, general ignorance and little opportunity for
Psychological Aspects of Faecal Incontinence
Julian M. Stern
5
discussion. A community-based research pro- gramme [11] explored the feelings of exclusion sec- ondary to FI. This study ran over the course of 5 years and involved a group of women suffering from multiple sclerosis (MS). Some of the main concerns in this group were in managing double inconti- nence, the effects of MS on sexuality and sexual rela- tionships, and trying to live well despite their chron- ic illness. The shared group experience gave them the freedom to talk openly about sex and inconti- nence, subjects about which they had previously felt compelled to be silent. Norton and Chelvanayagam [12] ran two focus groups at St. Mark’s Hospital in the UK to develop a research questionnaire titled
“Effects of Bowel Leakage”. For many participants, this was the first time they had ever spoken openly about their FI, and it was found to be mutually sup- portive to be able to speak openly to peers about the ever-present stress and risk of potential humilia- tion. As with Australian women [11], access to toi- lets and sexual relationships were cited as issues of concern. However, what came through was evidence of the extent to which all aspects of life were affect- ed–skin care, shopping, food, employment, travel, appearance and socialising, to name a few. Addi- tional groups have been conducted at St. Mark’s for patients with FI [13]. These groups have shown that common themes include “symptom checking” with- in the group; envying people with normal conti- nence; sporadic anger towards the medical profes- sion (as well as gratitude); problems with body image, sexuality and sexual functioning; as well as more complex intragroup dynamics, such as envy, rivalry and resentment.
The relationship between FI and its impact on quality of life (QOL) had been studied in the clinic but not in the community until the study by Bharucha et al. [14]. In that study, 23% of the subjects with FI reported that the symptom had a moderate to severe impact on one or more domains of QOL. This figure is similar to the proportion of subjects (32%) who reported that FI had “a lot of impact” on QOL in a UK-based study [15]. The impact on QOL was clearly related to severity of FI. Thus, 35% of patients with moderate FI and 82% with severe FI reported a moderate to severe impact on QOL [14].
The stigma involved accounts for the startling finding that only 10% of women with FI had dis- cussed the symptom with a physician in the past year.
Whitehead [16], in an editorial accompanying the study by Bharucha et al. [14], described this finding as “astonishing”, especially as the patients with milder symptoms who are least likely to present to their physicians are most likely to be helped by con- servative measures. Whitehead wrote: “There is…
speculation that patients may be too embarrassed or
they may be too sceptical that anything can be done about it” (p. 6). He suggested that researchers need to investigate why patients with FI do not report this symptom to their physicians and that there is a need for the development of public education methods to address this issue.
Sexuality
Little research has been performed on the effects of bowel problems and FI on psychosexual functioning in women. Trachter et al. [17] wrote whilst describing irritable bowel syndrome (IBS): “While there is an abundance of research addressing the medical aspects of irritable bowel disease, the psychosexual impact of these diseases is usually not targeted for investigation” (p. 413). In recognition of this, Collings and Norton [18] conducted a study to explore the psychosocial and psychosexual aspects of women liv- ing with FI. This was a small, exploratory study using a semistructured interview format. The participants reported a range of psychosexual issues, including current lack of arousal or desire and abstinence.
Unexpectedly to the researchers, this was not a uni- form problem, and seven of the 20 participants said it was not really a problem unless FI occurred during sexual contact.
Depression, Shame and Isolation
In the study by Collings and Norton [18], shame and embarrassment were common, and depression, stress, isolation, secrecy, poor self-image and sexual avoidance or aversion were also reported. These nar- rative-based findings tie in well with results from other studies.
Amongst adolescents with FI, psychosocial impairment was significant on the Child Assessment Schedule, the Child Behaviour Checklist and the Youth Self Report [19]. In a study of community- dwelling adults, FI was found to have a marked neg- ative effect on sexuality and job function and in some cases led to near total social isolation as a result of embarrassment.
Fisher et al. [20] used the Hospital Anxiety and Depression Scale (HADS) on patients with FI. They found that patients who had unsuccessful surgical intervention had significantly higher scores than did subjects with FI who had successful surgical out- comes. This finding mirrors several investigations in the urinary incontinence literature in which patients showed elevated levels of distress when treatment for incontinence was unsuccessful and no longer showed such elevations when treatment was successful
[21–25]. Additional associations exist between FI and anxiety, a fear of going out (which needs to be distin- guished from the more traditional psychiatric syn- dromes of agoraphobia/panic in the absence of FI), poor sleep (especially in those patients who suffer from nocturnal FI) and in some cases, the use of alco- hol, and drugs such as hypnotics or illicit drugs.
Coping mechanisms identified by 20 patients with FI in the study by Collings and Norton [18] included practical and psychological measures, such as:
restricting activity (five), knowing the location of toi- lets when out (five), care of diet or fasting (three), sep- arate bedrooms (three), wearing pads (five), denial (five), counselling (five) and turning to religion (one).
Psychological Assessment of the Patient with FI
Psychological assessment of the patient with FI requires a confidential setting that gives the patient a sense of being respected, carefully attended to and not rushed. In our experience at St. Mark’s Hospital, it is helpful if the patient recognises he or she is being seen by a mental health professional associated with a gastroenterology team who has an interest in and empathy for such problems and is aware of the shame, embarrassment and fear experienced by many patients with FI. Patients are very sensitive to the reactions of others to their FI and may (correctly in some cases) fear that the mental health profes- sional will be disgusted by the FI, just as other mem- bers of the public may be (in fantasy or reality).
The initial moments in the assessment may involve understanding something of the FI–its ori- gins, its aetiology and the impact on the various spheres of the patient’s life (family, friends, work associates, occupation, sex, leisure, travel etc.). Usu- ally, the patient is relieved to be able to talk about it and sometimes will become tearful or very angry, especially when there is a grievance (justified or unjustified) against a surgeon, physician, nurse or hospital. It is always important from the beginning to look for features of depressed mood as well as resent- ment, anger or the inability to express anger. In some cases, there is a manic attitude, which incorporates denial of the anguish involved, denial of the losses as well as pain and stigma.
It is important to take a full personal and family history, understanding something of the main rela- tionships and attachment figures in the patient’s past and present, as well as an educational and occupa- tional history. It is crucial to understand aspects of the patient’s social and psychosexual functioning, both pre- and post-FI [25, 26]. A medical, psychiatric and drug and/or alcohol history as well as some understanding of the patient’s present circumstances
are also required. The patient’s own personality structure and habitual way of coping and dealing with difficulties and interpersonal relationships will crucially colour his or her “relationship” to and mode of coping with the FI.
In order to fully understand the impact of the FI and its meaning to the individual patient, one must also look for issues of shame, guilt and stigma. Is there any sense that the patient feels he or she is to blame for the FI? Does he or she “deserve it”? Is there any secondary gain involved? Are there any symp- toms or behaviours that might worsen the FI, such as an unhelpful diet or any self-destructive behaviour?
(For a similar approach to patients, see Stern 2003a and b [27, 28], and with particular reference to par- enteral nutrition, see Stern 2006 [29]).
Other features of the assessment will include a brief assessment of the patient’s cognitive functioning and a mental-state examination to assess the presence of a formal psychiatric condition. This assessment requires expertise, patience, empathy and time.
Management
Following the assessment described above, manage- ment strategies can be devised. This depends not only on the patient’s psychological state but also on the availability of treatments in each particular case. For some patients, formal psychiatric management is required, especially if there is severe depression (or an anxiety disorder) that might benefit from pharma- cotherapy. Whether or not pharmacotherapy is indi- cated, it is almost invariably helpful for the patient if there is also some psychological treatment available.
Psychological treatment can take many forms, rang- ing from supportive counselling to cognitive behav- ioural therapy (CBT) or in-depth psychoanalytic psy- chotherapy [30, 31]. Treatment may be individual or in a group setting, and we recently described both group therapy and psychoeducational groups for patients with FI [13]. As shown below, some of the main themes from a brief psychotherapy group for women with FI are similar to the main themes from a psychoeducational group for women with FI:
Main themes from psychotherapy group meetings for women with FI
– Symptom checking
– Disclosure of bowel and physical symptoms – Experiences of health services
– Litigation – Loss
– Sexual functioning
– Disability and hidden disability – Employment
Main themes from psychoeducational group meet- ings for women with FI
– Disclosure of bowel symptoms – Seeking help and treatment – Availability of and access to toilets – Hidden disability
– Psychological aspects
Our experience in these group settings was that not only do patients feel more empowered following group treatment, they also on occasion report a less- ening of the severity of their symptoms, indicating a super-added psychogenic component to at least some of the severity of the symptomatology.
Biofeedback has also been proven to have a beneficial effect on patients with FI [32, 33] and is discussed else- where in this volume. One should not underemphasise the beneficial effects of the nurse–patient relationship in the biofeedback therapy, one that provides the patient not only with the specific techniques taught in the biofeedback sessions, but crucially, a safe place in which to talk to an empathetic confidante. The similarities between this and the importance of the so-called “non- specific factors” in psychotherapy are obvious [34].
Whilst the main focus so far in this chapter has been on the patients’ psychological needs, we should not forget the needs of two other groups–family mem- bers, and professionals looking after these patients.
The impact on the family, spouse and children can be immense, and support–be it through a social worker, family therapist or groups for family members-should be considered and made available where appropriate.
Professionals–for example, specialist nurses on the wards or in the community–caring for these patients have their own needs, too. The impact of dealing with the incontinent patient cannot be underestimated, and nurses (as with all of us!) have their own respons- es to the reality of FI. None of us are immune from emotions ranging from disgust to empathy, irritation to overidentification, and sadness to reparative wish- es. With this in mind, at St. Mark’s Hospital, we have developed programmes to support specialist colo- proctology nurses deal with the impact of their work on their own psyches, addressing issues such as their own feelings (countertransference) [29, 35, 36], as well as providing all members of the multidisciplinary team with a weekly forum in which to discuss prob- lematic patients or patient–staff interactions. This
“care of the staff” is crucial in allowing staff members to work productively and empathetically and to min- imise the risk of staff “burnout”.
Conclusion
What I have proposed in this chapter is a psycholog- ical approach to the patient with FI, recognising that,
for each patient, his or her FI will have a very indi- vidual, unique meaning based on that person’s histo- ry, relationships and psychological state. Assessment of the patient’s psychological needs is a time-con- suming but rewarding experience, and patients can be helped by a variety of means to feel less alone, less stigmatised and less disempowered. Medical staff members, too, can benefit from a forum in which these issues can be discussed. If these psychological factors are denied, they may appear to have gone away, but for the patient and for staff members, this disappearance is illusory.
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