Taking care of our mental health and wellbeing is an important consideration for many of us these days, and this may be particularly important for people living with an ileostomy or colostomy. I’ve spent several years researching the topic of mental health from the perspective of people living with a stoma. This has included many hours of conversation with ostomates and healthcare professionals in an attempt to understand the impact of having a stoma on people’s mental health and what can be done to improve emotional wellbeing.
In this article, I share some reflections from my own research, as well as drawing on research carried out by others in this field. It is important to highlight that I am not a clinician, and while I work with some fantastic healthcare professional colleagues, I do not approach this topic from a medical perspective. My interest originally stems from personal experience of living with an ileostomy (prior to undergoing a reversal), although the insights I will share are primarily based on the experiences of other ostomates that I have been lucky enough to engage with throughout my research.
It is known that undergoing stoma surgery can foster uncertainty and be emotionally distressing for many people. For some, this distress is short-lived, as they recover from surgery and adapt to their stoma, their distress subsides, and they feel more confident and comfortable. However, this is not the case for everyone. Some continue to feel distressed and may begin to feel anxious and depressed. These two responses are not always mutually exclusive; ‘positive’ experiences can coexist with finding things challenging. I carried out research as part of a team at Keele University in the West Midlands, where we interviewed young people in their teens and twenties who had stoma surgery due to IBD (Polidano et al, 2020). Many of the young people adjusted well to living with their stoma and felt ‘liberated’ because their symptoms had either improved or resolved completed. However, they also reported worries and feelings of depression. This is important, as it shows that somebody who is facing mental health difficulties due to stoma-related challenges, can, at the same time, be managing their stoma well and living a full life. On the other hand, just because somebody appears to be managing well, this does not necessarily mean that they do not need support, which is an important message to give to healthcare professionals.
How can a stoma affect a person’s body image?
So, what causes feelings of emotional distress to persist over time for some people living with a stoma? I’ll focus here on a few factors, which I’m sure many of you will be able to relate to. The first is concerns about body image. Several studies have found that people have negative feelings about their bodies because of their stoma and worry about other people being able to see the stoma bag under their clothes. This leads to concerns that they can no longer wear ‘flattering’ or ‘fitted’ clothing.
Managing your sex life with a stoma
Another common concern is about intimate relationships with partners. A recent study by researchers in Poland reviewed 13 studies (Paszynska et al, 2023) about stoma patients’ sex lives (which were picked out having screened several thousand studies). They found that having a stoma can negatively affect people’s sex lives. Sometimes this was due to sexual dysfunctions (in relation to certain types of surgery), but often it was because of individuals’ self-consciousness about their body, anxiety that their bag may leak, or fears about smells and noises. This sometimes led to ostomates feeling less satisfaction with their sex lives than before having a stoma.
Stoma bag leakage
Concern about bag leaks can also negatively impact ostomates’ mental health. A recent UK-based study aimed to achieve consensus on the difficulties faced by people with a stoma (Aibibulaet al, 2022). This research identified worries about bag leaks as a major concern. Individuals reported anxieties about experiencing leaks in public, often leading them to avoid social activities. These anxieties also affected their confidence at work, resulting in lower self-esteem.
Peer support
So far, this all seems to paint quite a gloomy picture. But this is not always the case; there is also research that highlights ways in which people with a stoma can be supported to manage their mental health. A consistent message from my own research is the value of peer support. Ostomates frequently highlight the importance of talking to, and hearing from, people who have experience of living with a stoma themselves. Often just knowing that someone else shares similar worries and concerns about their stoma can be very validating.
Accessing peer support can also provide reassurance and help to alleviate concerns For instance, in the study mentioned earlier with young people (Saunders et al, 2024) some talked about receiving advice, reassurance and tips from others who had lived with a stoma for longer than they had. This included one young person who, following surgery, was concerned about having to wear baggy, shapeless clothes for the rest of her life. She was reassured by others that she could wear the clothes that she wanted without her stoma bag being noticed, which had a huge impact on her emotional wellbeing.
Where to find stoma peer support
An important consideration is where to seek peer support. Some people find a lot of value in meeting in person as part of a group. Organisations such as the Ileostomy and Internal Pouch Association (IA, 2024) have local support groups that hold regular meetings, as well as schemes for new ostomates to connect with others for one-to-one support.
‘Any mental health concerns people have due to their stoma are valid and worthy of attention’
However, not everyone favours this form of support, and it is common these days for people to turn to social media for peer support. Our research suggests that ostomates should seek the form of support that best suits their needs, but should also approach online support with a critical eye, due to the risk of receiving inaccurate information that is not evidence-based. This is supported by a study in Saudi Arabia that analysed the accuracy of YouTube videos about living with a colostomy or ileostomyv (Azer et al, 2022). Out of the 149 videos they identified, nearly two thirds were assessed as being ‘not educationally useful’, often because information was not scientifically accurate or was not based on current evidence. Being able to trust online information and peer support is important, and seeking peer support through trusted sources, such as registered charities or your healthcare team, can give greater confidence in the support being received.
Another consideration regarding peer support is the increasing presence of social media ‘influencers’ who post openly about their experiences of living with a stoma. Research suggests that in terms of supporting people’s mental health, accessing this content can be a double-edged sword. Ostomates have highlighted the aspirational appeal of influencers, who showcase all the things that can be achieved with a stoma, whether it be travel, adventure or extreme sports. However, ostomates have also highlighted what they saw as the ‘glamorisation’ of stomas through some social media images, often portraying unachievable lifestyles or body images, which negatively impacted their mental health. They proposed the need for a balance between accessing images of aspiration, with a desire to also engage with people who were relatable and who share similar concerns to their own.
The mental health impact of stoma surgery
While mental health concerns after stoma surgery have been identified in many studies, often it is some time after surgery that individuals recognise the emotional impact. Seeking professional support for mental health concerns is therefore not only relevant in the immediate post-surgery period. However, people do not always find time and space to reflect on, or even fully acknowledge, this emotional impact. Sometimes they do not feel that their concerns warrant professional attention, for instance, taking the approach ‘it’s “normal” for me to feel this way’.
When ostomates do seek support, they can feel lost in the healthcare system, being unsure who to consult. An important message from research with both ostomates and health professionals is that any mental healthcare concerns people have because of their stoma are valid and worthy of attention, and that it is okay to seek professional support for these concerns, whether that be through your GP, stoma nurse or NHS Talking Therapies: (NHS, 2022).
Finding support from family and friends
The importance of support from family, friends and partners should not be underestimated. While ostomates may sometimes feel frustration that family members cannot fully understand what they are experiencing, research has highlighted the benefit that can be gained from this support (Ceylan and Vural, 2017).As highlighted earlier, concerns regarding sex can have negative mental impacts; however, some studies have found support from spouses or partners to be essential. Ostomates who had strong bonds with their partners returned to sexual activity more easily and led happier intimate lives. Many people also said that the process of adapting to a stoma made their relationship stronger. So, while they cannot always put themselves in your shoes, sharing concerns with trusted friends, family members and partners can have many benefits in supporting the emotional wellbeing of people living with a stoma.
Conclusions
In summary, whilst living with a stoma presents challenges that can lead to feelings of emotional distress, help and support is available to manage this distress. Individuals who access support, whether that be from other ostomates, healthcare professionals, or family, friends and partners, often report experiencing improved quality of life and wellbeing. It’s important for ostomates to seek the support that is best suited to their needs, and to make sure they are accessing trusted sources of information.
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