Boundary breaches: the body, sex and sexuality after stoma surgery

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Abstract

People with limited or no bladder or bowel control, who have had a stoma to manage elimination, have a particular awareness of the proximity of the sites of pleasure and excretion. Drawing on interviews and related ethnography conducted in Australia from 1998 to 2001, this paper explores how men and women with permanent continence problems negotiate their sexuality around their bodily unreliability. Pleasurable sex, idealized, involves losing control. People who are incontinent or rely on a stoma, however, must monitor their bladder and bowel, disguising the stoma and bag and controlling their body in sex as in other circumstances. The need to negotiate bodily boundaries with established partners, or to disclose to new sexual partners, results in self-consciousness and social unease, and people need to reconstruct notions of privacy and dignity so that breaches in bodily control do not undermine the sexual relationship. For many, the stoma undermines self-esteem and body image, while its management confuses the status of the individual as “normal” and the partner as carer or lover.

Introduction

Intimacy and privacy constellate not only specifically around sexual acts, but also in the most general ways the body itself. People with bodily anomalies, and their sexual partners, are particularly aware of the contradictions of the body and its exposure in intimate acts when the body and its imperfections are exposed. Absent body parts and various bodily dysfunctions complicate individuals’ social and sexual lives. People with bodies that are changed dramatically and irrevocably after surgery must similarly adapt, and in doing so must re-negotiate their bodies as a sexual canvas. The difficulty of this adaptation has been highlighted in literature on the social and sexual impact of breast, gynaecological and to a lesser degree, testicular cancer, when surgery has included mastectomy, vulval excision or the removal of a testis (Schultz, Van de Wiel, Hahn, & Bouma, 1992; Andersen, 1994; Gilbar, Steiner, & Atad, 1995; Lalos & Eisemann, 1999; Anllo, 2000; Fobair et al., 2001; Lagana, McGarvey, Classen, & Koopman, 2001; Joly et al., 2002; Schultz & Van de Wiel, 2003; Gurevich, Bishop, Bower, Malka, & Nyhof-Young, 2004). But body image and sexuality are also affected by other surgery. In this paper, the surgical change is the creation of a stoma, an artificial opening on the side of the abdomen. Surgery to close or remove the urethra or anus (and/or rectum) can result from several serious conditions; following surgery, elimination and other bodily practices become highly managed acts.

Around one in 1000 people in the developed world, depending on the country and its medical services, have a stoma. The surgery is undertaken for a number of conditions, some congenital, such as anorectal or urethral malformations, and others due to disease or other reasons for failure to function: bladder cancer, spinal cord injuries, colorectal cancer, an intestinal blockage or internal injury, inflammatory bowel disease or an intestinal abscess. Inflammatory bowel diseases such as ulcerative colitis or Crohn's disease are universally severe and incapacitating, circumscribing individuals’ professional and personal lives. These have no predictable prognosis and no options for control or cure; surgery is necessary to ease the symptoms and improve quality of life. For other diseases such as cancer, stoma surgery can be life-saving.

In surgery, the bowel or bladder is diverted to empty through an opening (stoma) in the abdomen. The stoma permits the attachment of a changeable, watertight bag that fills with urine or faeces and is emptied manually. Some people are able to dispense with the bag and instead are able to irrigate on a routine basis and wear a small stomal cap over the stoma. With ulcerative colitis, the surgery may be temporary, with an anastomosis performed later to preserve the anal sphincter and normal intestinal patterns, thereby also improving social and sexual functioning and quality of life (Bigard, 1993; Oresland et al., 1994; Damgaard, Wettergren, & Kirkegaard, 1995). Many people do not have this option, however, and must continue to use a stoma and bag, or a stoma, plug and irrigation.

An important and ongoing tension exists for people who, on an everyday basis, have to deal with their bodies as objects, caring for the stoma, preventing lesions and infections, changing bags and so on. The tension is both to establish a routine such that the stoma does not intrude in everyday life, and despite the artificial management of faeces and/or urine, to establish an illusion of normalcy. Individuals’ sense of themselves, and others’ perceptions of them, are informed by presumptions of a link between the physical body and the self (Manderson, 2000), and managing a stoma impacts on self-image and sexual/social relationships (Klopp, 1990; Cohen, 1991; Gloeckner, 1991). Individuals need to separate self from substance—the subject (the “real” self) from the object (body-with-stoma). The challenge for many is to establish, or re-establish, a sense of identity unrelated to the body, so that they are recognised for “themselves,” despite and apart from the barrier to this that their non-conforming body might present. Some people are able to make this first step without difficulty, and for them, the problem lies in others’ difficulty in doing this. Others find it more difficult. Reluctance to discuss the nature of the surgery is influenced by cultural ideas of delicacy and aesthetics in relation to changed bodies and body functions. The particular difficulty for individuals with a colostomy or ileostomy is the link with defecation, sensory and cultural aversions to faeces, and the need therefore to reconcile or manage potential and actual experiences of disgust. Miller reflects on how the idiom of disgust consistently invokes sensory experience: of being “too close” to the object of disgust, and of having to smell it, see it, and touch it (Miller, 1997). Disgust is a visceral emotion; so is lust. Hence the contradictions for those who must reconcile sexuality and their stoma.

Section snippets

Background

As noted, stoma surgery is conducted for a variety of chronic and acute conditions. Inflammatory bowel diseases and chronic bladder problems are particularly prevalent, and cause considerable anxiety and depression, often in combination with and exacerbated by pain and reduced energy (Sewitch et al., 2001; Smolen & Topp, 2001). The physical affects of these diseases, their unpredictability, and the importance for individuals of organizing around their bodily needs, impact on family and

Methods

The data on which this paper is based were collected as part of a larger, ongoing study on body change, chronic disease, disability and social inclusion. Thirty-two participants responded to a research note placed in Ostomy Australia, a national journal provided three times a year to all Australians (26,000) who receive government-subsidized stoma supplies. Unstructured interviews were conducted with 18 of these people in three states at their choice of venue, usually their home. Because

Adapting to change

Loss of bodily control over body waste, Isaksen (1996), Isaksen (2002) argues, places individual identity and human dignity at risk. Incontinence and surgery to correct this, or surgery to prevent the spread of disease, can subvert notions of adulthood, and while surgery can be liberating, it can also strip individuals of autonomy and inhibit their ability to live productive and fulfilling lives. Individuals find meaning in their corporeal as well as their social, emotional and intellectual

Disguise and discomfort

For many men and women who participated in this study, incontinence of the bladder or the bowel leads to feelings of depression and loneliness, as well as presenting practical dilemmas that impose a social and emotional burden—the need to manage the environment by identifying where toilets and change rooms are located, arranging for supplies if planning a lengthy trip, carry pads and/or changes of clothing, and so on (Peake et al., 1999; Fultz & Herzog, 2001; Peake & Manderson, 2003). While

Sex and sexiness

Values relating to bodily parts and sexual repertoires are relevant in any context, as well as in relation to physical disability, and the most rigid interpretations of these inform illiberal notions of the right to desire, to be desired and to be sexually active. Part of disgust, Miller argues, “is the very awareness of being disgusted, the consciousness of itself” (1997, p. 8). Disgust is a visceral response which, provoked by faecal waste, urine, associated odours and sounds, is accompanied

Concluding remarks

Control of bodily functions is a passage to and precondition of conventional adulthood. Sexual negotiation and autonomy, too, is informed by constructions of adulthood. For many men and women, the sense of self as a valued adult and as a sexual being was threatened not only by the illness that led to surgery, but also by the lived experience of having a stoma. The permanent loss of continence also challenges others in relation to them, as evident in the ways that men and women narratively

Acknowledgements

An earlier version of this paper was presented at the fourth conference of the International Association for the Study of Sexuality, Culture and Society, The University of the Witwatersrand, Johannesburg, South Africa, 21–25 June 2003. The study was funded by small grants from Australian Research Council (ARC) through the University of Queensland (1998) and University of Melbourne (2000). Permission to conduct the research was granted by the Behavioural & Social Sciences Ethical Review

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