Exploring the body image experiences of women with a permanent stoma

Psychological impacts of stoma surgery

Living with a stoma can give rise to many challenges resulting from both physical changes to one’s body and psychological adaptations (Knowles et al., 2017). In recent years, researchers have begun to explore the psychological implications that arise following stoma surgery (Capilla-Díaz et al., 2019; Di Gesaro, 2016; Jayarajah et al., 2016). Several studies report that reduced social functioning, difficulties with intimacy, anxiety, embarrassment and body image issues are experienced by those who live with a stoma, and over time have a detrimental impact on the patient’s overall quality of life (Black, 2004). Ross et al. (2007) compared a stoma group versus a non-stoma group and found differences in social functioning and sexual issues between the two groups. Depression and anxiety levels were significantly higher among the stoma participants.

Several factors contribute to a poorer psychological outcome following stoma surgery such as poor preoperative preparation (White and Hunt, 1997) and complications relating to the stoma itself (Pittman et al., 2009). Despite evidence of poor psychological outcomes following stoma surgery, these issues are often overlooked by medical professionals (Di Gesaro, 2016). Some researchers have suggested that the psychological issues experienced by individuals with a stoma outweigh the physical issues (Mørkhagen and Nortvedt, 2023). The existence of a stoma is associated with several unfamiliar changes, both bodily and psychological (Honkala and Berterö, 2009). However, the circumstances that lead to someone needing a permanent stoma can greatly impact one’s perception of it and the extent of psychological problems associated with the stoma. Polidano et al. (2020) showed that psychological problems in patients with IBD following stoma surgery were present; however, the patients also reported positively about living with the stoma particularly regarding their liberation from IBD symptoms. Conversely, for those who received a stoma following a diagnosis of cancer, the diagnosis itself can be an extremely distressing time for the patient. Thus, the addition of a stoma can exacerbate these feelings of distress, leading to a heightened sense of loss and discomfort (Smith et al., 2017).

Body image

The formation of a stoma involves breaching body boundaries and can significantly change how one’s body looks and functions (Taylor, 2015). One of the most common negative psychological effects noted by women living with a permanent stoma was that of an altered body image (Redeker et al., 2025). Body image is an umbrella term used to describe perceptions, cognitions, behaviours and subjective evaluations of one’s body (Frederick et al., 2022). It is a complex multifaceted construct, involving perceptions and evaluations of one’s body with many positive and negative subcomponents such as body dissatisfaction, body-esteem, shame, body acceptance and appreciation (Thompson et al., 1999). Disturbances in body image have been defined as a persistent report of dissatisfaction, concern and distress associated with an individual’s physical appearance and is associated with impairment in social functioning and activities (Jayarajah et al., 2016). One’s body image is constantly changing during different stages of life and can be influenced not only by physical (e.g. body shape) or psychological factors (e.g. low self-worth, perfectionism) but also social (e.g. unrealistic beauty standards, social media) and personal circumstances (McLean et al., 2011). Historically, research has focused on the limited notion that body image issues solely involve body weight and shape, yet it is essential to look beyond this limited scope and examine the rich diversity of human experience and how it can influence body image. This includes challenges faced by individuals who have undergone significant physical changes, such as those who have undergone stoma surgery.

Body image following stoma surgery

An ostomate is an individual who has undergone a surgical procedure to create a stoma. People with bodies that are changed dramatically and at times irreversibly must adapt to a new bodily reality, which can be extremely difficult (Manderson, 2005). Much literature has highlighted these difficulties in relation to physical alterations from medical treatments such as surgery that has involved reconstruction such as mastectomy (Przezdziecki et al., 2013). To date, there is only a small body of literature exploring the impact of a stoma on body image; however, the existing literature indicates that individuals, particularly women, living with a stoma often experience significant disturbances in body image. In a study by Sharpe et al. (2011), women living with a stoma reported much higher body image disturbances than women who did not. Jayarajah et al. (2016) reported that women with a stoma experienced lower value as a woman compared to ‘healthy women’, and that the presence of the stoma on their body made them feel uncomfortable and unclean. As suggested by Black (2000), coming to terms with a new body image after a life-altering surgery is an interpersonal experience for ostomates and the way in which people respond depends on their attitudes, thoughts and feelings they have towards his or her own body.

According to Benedict et al. (2016), 40% of colorectal cancer patients experienced clinically meaningful body image problems in their first-year post treatment. In a similar study, disturbances in body image among colorectal patients was an independent predictor of depression, anxiety and distress following surgery (Sharpe et al., 2011).

The body image impacts of stoma surgery extend beyond self-esteem and self-confidence and may significantly impair one’s sexuality and sexual functioning. Understandably, perceptions of reduced attractiveness following stoma surgery can also affect intimate relationships, with patients experiencing concerns regarding sexual functioning, activity and overall intimacy (Black and Notter, 2021). Common worries around sexual functioning include the visibility of the stoma, incontinence accidents, embarrassment and feelings of un-attractiveness (Sharpe et al., 2011). Davidson (2016) found that ostomy patients reported that the presence of the stoma significantly impacted sexual activity. These concerns were most reported by those with a permanent stoma or who had undergone colorectal surgery (García-Rodríguez et al., 2021). Sexual problems are another critical aspect of body image and, like other psychological impacts of stomas, are often overlooked.

A stoma also presents a unique challenge in the context of body image due its concealed nature, meaning that it is invisible to others and may only ever be visible to the person with whom it is connected to. The hidden aspect of the stoma contrasts with the profound presence it can have on an individual’s perception of their body. People who are coping with a significant body alteration such as receiving a stoma are likely to experience difficulties between their internal world and their new public identity (Black, 2012). The invisibility of the stoma to others demonstrates that body image disturbances are not only related to how other people perceive us but also how we perceive ourselves.

This study

At present, most studies in the field of stoma related body image research have suffered from an overemphasis on quantitative measures and fail to look at the importance of lived experiences. Given that females are more likely to be concerned with body image and tend to suffer with more body image disturbances, this study will be focusing solely on women living with a permanent stoma. Given the life altering nature of the procedure, this study further aims to explore how pre- and post-operative support may influence participants’ adaptation to an altered body image.

Design

A qualitative research approach was used to provide a rich and holistic picture of women’s lived experience of body image following stoma surgery.

Participants

This study comprised 12 participants between the ages of 35–60 years of age. All participants were female and currently residing in Ireland. All participants met the following inclusion criteria: (1) women who are 18 years and older, and (2) currently have a permanent stoma. The duration of time each participant was living with the permanent stoma at the time of interview varied between 6 weeks and 12 years. Among the participants, seven received a stoma due to colorectal cancer, two due to Crohn’s disease and three because of ulcerative colitis.

A purposive sampling method was predominately used to recruit participants. Purposive sampling aims to recruit participants that are ‘most likely to yield appropriate and useful information’ (Kelly, 2010: 317). Participants were recruited based on predefined criteria that aligned with the research topic. Participants were recruited through an online support group for ostomates in Ireland, allowing access to a population with lived experience of stoma surgery. Snowball sampling also enabled the researcher to recruit participants as suggested by other participants. As the study population aimed to consist of women who have received a permanent stoma, online stoma support groups advertised it to members of the group.

Procedure

Data collection was performed through semi-structured interviews and took place between the months of April and June 2024. The use of semi-structured interviews allowed for the collection of rich data from the participants, who were given the opportunity to speak freely about the research topic. Prior to the interview, the participants were provided with an interview schedule containing a series of open-ended questions that invited the participants to describe their experiences living with a permanent stoma. Examples of questions to participants included the following: ‘Has your body image been impacted since receiving a permanent stoma and, if so, how?’, ‘How has your experience with the Irish Health System been in terms of support received?’, ‘Do you feel you have accepted the stoma as a part of your body?’, ‘In what ways do you think patients could be better supported following stoma surgery?’.

Basic demographic information (e.g. age and circumstances that led to needing a stoma) were also collected. All interviews were conducted online via Zoom. Following the interview, each participant was emailed a debriefing sheet that contained relevant psychological support services should they need to avail of them. Once data saturation had occurred, the data collection phase was then complete. In this study, data saturation was reached once 12 interviews were completed. The recorded data was then transcribed verbatim for analysis and pseudo-anonymised, meaning that all identifiable information was removed from the transcript to safeguard participant’s privacy.

Data analysis

Data analysis was carried out under the principles of thematic analysis developed by Braun and Clarke (2006). An inductive, bottom-up approach was taken which meant that the development of codes and themes were directed by the data itself (Braun and Clarke, 2021a). This was a recursive process, following the six-step framework as outlined by Braun and Clarke (2006).

Researcher positioning

Data were interpreted from a critical realist epistemological standpoint. Participant experiences were considered approximations of reality, underpinned by existing social and psychological constructs (Willig, 2013). This approach was chosen over alternatives following reflection by the lead investigator on her own theoretical approach to research. She adopted an anti-authoritative role as an interviewer, with participants positioned as experts on their own condition; the researcher assumed the outsider role when clarifying health or medical terminology (Braun and Clarke, 2021b).

Ethical considerations

This study received ethical approval from the University on the 28th of March 2024.

Adjusting to a new reality

All participants spoke about their experiences with an altered body image post stoma surgery. Participants who received a stoma as a result of a diagnosis of colorectal cancer expressed far greater disturbances in body image and overall, more psychological impacts than those who received the stoma either due to Crohn’s disease or ulcerative colitis. Each participant shared their difficulties and ways of coping with the stoma and alterations in body image, which are identified through two sub-themes: (i) A Changed Body and (ii) Coping through Concealment.

A changed body

A recurrent theme in the interviews was a sense among the participants that the presence of a permanent stoma had significantly impacted how they perceive their body image, and over all sense of self. Extreme emotions were expressed by participants in relation to how their body looked following surgery, with the majority of participants expressing that adjusting to an altered body image was the hardest challenge of all.

I think it’s the body image bit of it is what I struggle with the most, like the practical side of it I could do in my sleep (Participant 9)

Physical changes such as weight-gain, scars and lumps were also discussed as side effects that emerged following surgery:

I’m not very comfortable at all if I could change my body back to what it was I would in a heartbeat. . . My whole body is very scarred and there’s lumps and bumps now where there never were before (Participant 2)

Participants who received a stoma following a diagnosis of colorectal cancer highlighted their concerns about the functionality of their bodies following such an aggressive illness, fearing it no longer works as it used to:

I’m very conscious that it (body) is broken and that it’s weak. . . I don’t feel like me in this body but a defective stranger. (Participant 4)

Coping through concealment

A predominant concern among participants was feeling uncomfortable looking at their own body. Consequently, some participants admitted to covering or hiding the stoma as a way of coping. In order to minimise its visibility for themselves and others, participants expressed ways in which they would conceal the stoma from view by wearing specific types and coloured clothing. Anxiety and fear over trying to disguise the stoma from the view of others undoubtedly seemed to overwhelm the participants’ daily routines.

I mean now I always have something there that I have to disguise. . . I always try to cover this area of my body or stand in a way where it wasn’t obvious. You have to be careful of things and adjust what you wear. . . you’d have to think carefully of colours, darker colours, maybe. . .. (Participant 5)

The creation of the stoma affected many individuals’ lifestyle and the things they enjoy doing. Participants discussed their concerns about feeling embarrassed about people seeing their stoma and choose to avoid some social situations. One participant spoke about the extent she would go to prevent someone from seeing the stoma on her body:

“I’m very conscious that it is very visible underneath my leggings. So, I don’t go to an ordinary gym with other people. I just go to a person trainer on my own, and I make sure that I’m the only person in the room there.” (Participant 4)

It was clear from the interviews that by concealing the stoma, some participants feel more comfortable with their bodies, particularly in social situations, allowing them to maintain a sense of normality.

The need for control over ways to hide the stoma and prevent who sees it is evident among the participants as a way of coping. Many explained how they no longer wear jeans as they are too restrictive and make the stoma more visible. One participant commented on their love for fashion and retro clothing prior to stoma surgery but has since had to discard many pieces of clothing as they are no longer suitable for her or her body:

“My body has really changed, so retro dresses that I had before my surgery that I loved, I can’t wear now . . .. If you want to wear a dress, you’d have to really try to hide it . . .. I would feel like people could see the shape of it. You’re always looking at clothes that will actually hide it and not make it stand out” (Participant 9)

Participants who concealed their stoma appeared to experience greater levels of body image disturbances, whereas those who adopted a more open approach tended to express greater acceptance.

A lack of representation

A clear theme that emerged from the interviews was the lack of support and representation for female ostomates. Many participants expressed feeling stigmatised given the lack of conversation and support surrounding body-image, intimacy and femininity following stoma surgery.

Moving Forward

The majority of participants spoke to their experiences of moving forward with their lives following stoma surgery.

Strengths and limitations

The qualitative nature of the findings from this study adds new knowledge to the body image and stoma literature. This study identifies the factors that contribute to body image alterations in women post stoma surgery, providing an insight into how these women perceive their bodies and providing a possible explanation for some of the poor psychological outcomes following this intervention. This study also offers a strong basis of information onto which a more efficient psychological support system for ostomates in Ireland can be built.

Some limitations are also present in this research study. The first limitation pertains to the homogenous sample whereby all participants were female. While a female-only sample size provided rich insights, it made it impossible to note any gender differences with regards to how individuals perceive body image post stoma surgery. Cultural context is important for examining the varied impacts of living with a stoma. As the participants in this study were not from culturally diverse backgrounds, future research may analyse how cultural factors can influence body image. Secondly, as some of the participants in this study had only been living with a stoma for a very short period, a longer timeframe for data collection may have allowed for a deeper exploration of both adaptations to changes in body image and overall acceptance. A further limitation of this study relates to the relatively smaller sample size. Future research with larger samples may further contribute to the knowledge in this field. Finally, as the data was derived from self-reported accounts, the findings may be subject to response biases, such as social reliability bias.