Colostomy UK is the country's oldest stoma charity. A great deal has changed over the years, although the one thing that has stayed largely constant is our mission – to support anyone living with any kind of stoma.

For those that may not be aware, a stoma is a surgically created opening on the surface of the abdomen that allows stool or urine to leave the body when the bowel or bladder are unable to function normally. Waste is collected in a 'stoma bag' which sits over the stoma, using an adhesive to attach it to the abdomen.

People have stomas for all sorts of reasons. From chronic conditions such as inflammatory bowel disease (IBD), through to various forms of cancers, as well as physical traumas which may be caused by an accident or childbirth (Colostomy UK, 2020; NHS, 2024).

Over 200,000 people in the UK are living with a stoma (also known as 'ostomates') (Osborne et al, 2022). They range from babies to older people, and everyone in-between. Ostomates experience a variety of challenges. 
 

There is a lack of understanding and awareness around what stomas are – not helped by the notion that 'poo is the last taboo'. Ostomates often find that public and venue toilets do not have the correct facilities to enable them to change their bags easily or hygienically. As a hidden disability, there is often a stigma associated with ostomates using accessible toilets too. Then there are also practical concerns to consider, such as leaks and sore skin, and the psychosocial impact on people's daily lives, including work, travel, and relationships, and the effect this can have on mental health (Ayaz-Alkaya, 2018). 

Colostomy UK offers emotional and practical support to the stoma community through a range of services, provided by our small but mighty staff team and our fantastic cohort of 80+ volunteers, who each have lived-experience of life with a stoma. 

Among other direct services, we provide a 24/7 stoma helpline, a private, monitored Facebook group with over 12,000 members, and a befriending service. Lots of people benefit from our health and wellbeing classes, called Active Ostomates, through which people can improve their fitness or find time to relax through things such as swimming, yoga and meditation. For hardier ostomates, we also have two incredible rugby league teams, including wheelchair rugby and our physical disability team. Through our quarterly magazine, Tidings, ostomates can hear the latest news in stoma care, practical tips from medical professionals and real-life stories from other members of the community. 

We also work closely with stoma nurses and other relevant healthcare professionals through a number of initiatives. For example, we provide a variety of literature titles, free of charge to nursing departments. 

We offer a workshop entitled 'caring for a person with a stoma' to healthcare professionals to help upskill on the unique needs of ostomates. Our bi-monthly newsletter enables clinicians to stay updated on the latest news from Colostomy UK and the wider stoma community. We can also regularly be seen at various events and study days for nurses, usually with Colostomy UK volunteers with us to deliver talks on any number of topics.

Our fundraising and campaigns teams arguably have the most varied and fun projects within the team, however. Every April we hold our major fundraising event, 'Step Up for Stomas', which sees scores of ostomates, friends and families, even clinical teams take up a physical challenge to help raise vital funds for the charity.

At the time of writing, the fundraising team was also just gearing up to the launch of our Grab a Cuppa coffee morning initiative that is running throughout the month of October, and into November. The aim of the event is to bring people together over a cup of tea or two, to ensure that they are able to access the emotional support, practical advice, or reassurance they often need. The event is also a great opportunity to raise funds for Colostomy UK, whether the events are taking place over a cuppa and a chat in the home, a bake sale at work, or an even bigger community get-together.

The campaigns team also has lots of exciting activities on the go. This includes supporting the government to ensure their stoma guidance remains updated and fair to all. Our stoma friendly toilets initiative pushes venues and public locations across the UK to become accessible to ostomates. Last year, some 51 new spaces went stoma-friendly, including stadiums, stations, and even castles!

National Stoma Awareness Day is also upon us, with the annual event being held on 4 October. To mark the occasion, we are running a major new campaign – Stoma MythBusters. As the name suggests, its aim is to challenge myths, break down stigma, and replace misinformation with real, lived experience.

So all in all, an exciting time for the charity. But then again, there never seems to be a dull moment!

Originally published in Journal of Community Nursing: Othen-Reeves R (2025) Colostomy UK’s work within the stoma community. J Community Nurs 39(5): 18–19

More information

To find our more about our work, you can visit the Colostomy UK website at: www.colostomyuk.org/

For more on our Grab a Cuppa Fundraiser, visit: www.colostomyuk.org/brew-up-something-special-grab-a-cuppa-for-colostomy-uk

And for our Stoma MythBusters campaign, please go to: www.colostomyuk.org/campaigns/stoma-mythbusters/