The Last Taboo(s)! Insights from an Ostomate Sex Therapy Focus Group

22 April, 2026

There are many contenders for society’s ‘last taboo’ – topics that we often find terribly embarrassing to discuss openly. Sex is of course one such subject. Bodily functions are another. No wonder then that there is comparatively little guidance on the topic of sex and bodily functions. At Colostomy UK, we decided to tackle this issue head on.

We partnered with Sue Lennon, a sex therapist with years of experience in supporting ostomates to regain sexual and body confidence, enabling people to live their sex lives to the full.

Together, we invited a diverse range of people living with stomas to attend a focus group session* to talk about sex and all that goes with it – the highs, the lows, and crucially, how these experiences and knowledge might inform new resources and services at Colostomy UK and within the wider stoma community.

Participants

The focus group drew a mix of participants, reflecting the variety of the stoma community. The ages amongst attendees ranged from 22 years up to 70+.

We also had representation from the LGBTQ+ and disability community, a mix of men and women, as well as a range of underlying conditions.

Between the participants, all three of the main types of stoma were represented (colostomies, ileostomies, and urostomies). Two of our attendees were also living with two stomas, including one person who lives with a lesser-known type of stoma, called a mitrofanoff.

Some were relatively new to life with a stoma, and were able to share recent experience regarding issues of self-esteem and managing relationships. Others had been living with their stomas for many years, bringing years of wisdom to the conversation.

The Purpose of the Focus Group

The aim of the session was to hear ostomates’ experiences of sex in relation to living with a stoma. We of course wanted to understand participants’ challenges and concerns, but also the positive aspects to sex as well. The physical freedom that a stoma brings to many, for instance, or the reassurance that comes from the loving support of a partner.

By hearing directly from participants, we hope to inform future initiatives, from educational materials to interactive resources, ensuring that they are relevant, accessible, and genuinely helpful within the wider stoma community. The focus group was just stage one of this piece of work (read on to find out how you could also get involved).

Topics Covered

Led by Sue, participants opened up about a wide range of topics, reflecting the many facets of sex while living with a stoma. Some of the main areas covered included:

1. Practical Living:

Participants shared tips and experiences around day-to-day stoma management in relation to sex. This included discussions about bags, accessories, and stoma care companies which offer relevant products, as well as managing hygiene and comfort.

2. Intimacy and Confidence:

One of the most valuable parts of the session was exploring issues around sex, intimacy, and body-confidence. Attendees highlighted how a stoma can impact relationships, and shared ideas for navigating these challenges. Participants also noted how experiences differed depending on gender, sexual orientation, age, and other characteristics.

As many ostomates would affirm, living with a stoma is not the only aspect which may affect someone’s sex life or confidence in the bedroom. The group talked for some time about underlying conditions and medical procedures which had also impacted on their ability to have sex, including chemo and radiotherapy, and surgeries. From erectile dysfunction or risk of impotence for men, through to a loss of sensation or partial removal of the vagina for some women in the group.

3. Emotional Wellbeing:

The psychological side of engaging in sex while living with a stoma of was another key theme. The group talked about the sense of loss or anxiety that can come with bodily changes, and the importance of rebuilding body-confidence and self-esteem. It seemed clear to us that any future resources on the topic of sex should have a focus on psychosocial support if they are to be truly effective.

4. Community and Support:

Another key theme was the importance of connection and peer support. Many participants reflected on how sharing personal stories and practical tips helps to normalise the topic of sex amongst the stoma community, as well as providing reassurance to others facing similar challenges.

The focus group was itself an example of this peer support in action, as participants listened attentively to one and other, offered words of encouragement and shared advice to each other based on their own experiences.

Ideas for Future Resources and Services

We are still in the very early days of working through all the rich learnings from the focus group session – but we can hint at some of the great suggestions which participants came up with while together. Ideas included guidance on conversations with partners, tips for managing intimate moments, and how best to broach sex with your stoma nurse.

Other top tips included:

• Practical, easy-to-access advice that addresses both general sexual health queries as well as intimacy concerns should be high priority.
• The importance of emotional support, helping people feel more confident and comfortable in their bodies when it comes to sex.
• Thinking outside the box, with creative and inclusive approaches to engagement (rather than just relying on resources like printed booklets) is likely to increase people’s interest and help them to feel relaxed around the topic of sex.
• The need for resources that reflect diverse experiences, acknowledging that everyone’s journey is different.

It is our hope that these ideas will become the guiding principles for any initiatives and resources which we develop on the topic of sex while living with a stoma.

Get involved:

If one thing became clear from our focus group session, it was that everyone’s experience of sex and perceptions of themselves are different. Which is why we would love to hear from as many ostomates as possible to help inform any future resources we create from this project.

Any contributions will remain anonymous and focus on exploring sex while living with a stoma through a therapeutic lens.

If you would like to get involved, please contact us via the editor inbox: editor@colostomyuk.org

*Colostomy UK would like to thank Irwin Mitchell Solicitors in Birmingham, who kindly hosted the sex therapy focus group session at their offices.

We would also like to give a big heartfelt thanks to everyone who took part in the focus group.