Living with a stoma: the emotional impact

For many people, stoma surgery is lifesaving, or at the very least life-improving. Yet what is often less spoken about is the emotional and psychological impact that can follow.

In the UK, around 1 in 335 people are living with a stoma, and thousands more undergo surgery each year. While medical care understandably focuses on the physical aspects of recovery, the emotional experience can sometimes be left in the background.

Through my research, my work and the voices of those living with a stoma, it has become clear that this is not simply a physical adjustment. It is a deeply personal journey that can affect identity, self-esteem, relationships, and can impact how someone feels about themselves in the world.

More than a physical change

A stoma is formed when part of the bowel or urinary system is brought through the abdominal wall, allowing waste to pass into an external pouch. Although this can relieve serious or life-limiting symptoms, it also represents a significant change to the body.

For many people, this change can bring a range of emotional responses, including anxiety, low mood, uncertainty, and a sense of loss. Some people describe feeling physically better after surgery, but still struggle with how they feel emotionally.

There can be a sense of “my body is no longer the same”, and with that, questions about identity often begin to surface.

Self-esteem, body image and identity

One of the strongest themes within my research was the impact on self-esteem. Living with a stoma can change how someone sees their body and, in turn, how they see themselves. Feelings of being “different” or “not normal” were commonly described, alongside worries about how others might react. This can affect one’s confidence in social situations, intimate relationships, sense of attractiveness and overall self-worth.

For some, this leads to withdrawing from situations that once felt comfortable, reinforcing feelings of isolation. From a therapeutic perspective, this makes sense. When something challenges our sense of who we are, it can create a disconnect between how we used to see ourselves and how we feel now. Without space to process this, those feelings can become overwhelming.

When emotional support is missing

Studies show that ostomates can have negative thoughts, beliefs and underlying fears of societal norms such as talking openly about the taboo elements of elimination of body waste, along with the loss of what is typically considered a normal bodily function, and this can have a major impact on psychological well-being.

Despite the emotional impact, psychological support is not routinely offered as part of stoma care. Many people receive excellent practical and medical support, particularly from specialist stoma nurses. However, conversations around emotional well-being, body image, or intimacy are often less visible.

Some people may feel unsure about bringing these topics up. Others may not realise that what they are feeling is something they can seek support for. There are also wider barriers, long waiting times for NHS mental health services, uncertainty about how to access counselling, and concerns about cost, which can all make it harder to reach out for help.

Even though conversations around mental health are becoming more open, there can still be an added layer of difficulty when the experience involves areas that feel more private or taboo, such as bodily functions or sexual well-being.

The importance of being able to talk

Something that came through strongly in my research, and in my counselling sessions with ostomates, is the value of having a space to talk openly.

For those who access counselling, the experience is often described as helpful and relieving. Being able to speak honestly, without judgement, allowed them to begin making sense of what they had been through and how they were feeling.

Counselling helps to explore difficult and complex emotions, rebuild confidence and self-esteem, and enables an ostomate to adjust to changes in body image and make sense of their experiences. At its core, counselling offers a space where someone can be heard and accepted as they are. This can be particularly important when someone is struggling with feelings of difference or shame.

The often overlooked impact on intimacy

Another area that is not always openly discussed is the impact on intimacy and relationships.

Concerns around attractiveness, fear of rejection, or anxiety about how a partner might respond can all play a role. When these concerns are overlooked and not addressed, they can affect not only the ostomate's relationships with others but also the relationship someone has with themselves.

Having a safe space to explore these feelings can make a significant difference. Even simply being able to name and talk about these experiences can reduce the sense of isolation.

A more holistic approach

A more holistic approach recognises that emotional well-being is just as important as physical recovery. Ostomates need to feel supported as a whole person, not just as a person with a stoma. Creating more opportunities to talk about emotional and relational impacts and ensuring that people know psychological support, via counselling, is available and can help with adjustment to life with a stoma, emotional well-being, and quality of life.

Adjusting to and living with a stoma can bring challenges that are not always visible from the outside. While the physical aspects are often well managed, the emotional impact can remain underexplored. Creating space for these experiences to be acknowledged, understood, and supported can make a meaningful difference.

If you are living with a stoma and struggling with how you feel, please know that you are not alone and it is OK to seek support.