World Ostomy Day: Breaking down the stigma and raising awareness of the support available to those living with a stoma

Ostomy Awareness Day, also known as World Ostomy Day, takes place on 5 October. Every year on the first Saturday of October people come together to celebrate the strength and courage of individuals living with an ostomy. It’s an occasion to raise awareness, dismantle the stigma and to embolden those living with ostomies to lead their most fulfilled lives. 

What is a stoma?

Before discussing the importance of Ostomy Awareness Day, it's important to understand some of the terminology used.

A stoma is a surgically created opening on the abdomen that diverts the flow of faeces or urine from the body. Waste products are then expelled from the body into an external pouch called an ostomy bag. Stoma surgery is undertaken to treat a range of illnesses such as cancer, inflammatory bowel disease or following trauma to the abdomen. 

There are three types of stoma:

• Colostomy – an opening from the colon (large intestine)
• Ileostomy – an opening from the small intestine, specifically the ileum 
• Urostomy – an opening to allow passage of urine

It's now estimated that 1 in 355 people in the UK are currently living with a stoma. Individuals sometimes refer to themselves as part of the ‘ostomate’ community. 

Ostomy awareness

Living with an ostomy can be both physically and mentally challenging. There are a number of practical considerations that ostomates have to think about on a daily basis including dietary adjustments, ostomy care routines and the availability of accessible toilet facilities. 

The emotional and psychological impact of living with an ostomy can be significant and many individuals struggle with feeling self-conscious about their stoma. There may be many difficult changes to a person’s lifestyle, including impacts on physical activities, relationships and sexual health. 

Over the last year there has been significant progress with raising awareness about ostomies with the general public. A number of media personalities, such as radio presenter Adele Roberts and reality TV star Louise Thompson, have spoken candidly and positively about their ostomies. However, as well as high-profile celebrities there are lesser-known individuals carrying out incredible work to raise awareness by sharing their own experiences.

One person who exemplifies the values expounded by Ostomy Awareness Day is Gill Castle, author of the Stoma Chameleon blog and well-known campaigner.  In 2011 Gill required a colostomy after suffering a fourth-degree perineal tear and further extensive injuries during the birth of her son.

Previously a serving police officer, Gill took early retirement on mental health grounds following her birth trauma. A very active person prior to her son’s birth, Gill started to use exercise and physical activity to aid her recovery. She started with walking and then progressed to cycling and swimming. 

Gill then progressed to triathlons, sky diving, scuba diving, climbing and open water swimming. Gill described having a “lightbulb moment” when she read an article by a triathlete with a stoma and realised that the colostomy was still enabling them to lead an active life. 

In September 2023 Gill became the first person with a stoma to swim solo across the English Channel. She swam mostly in the dark from Dover to France in just under 14 hours to raise awareness of birth injuries and ostomies. She said that she took on the swim to “prove you can do anything with a stoma”. 

Gill has also set up a charity, Chameleon Buddies, to help women in Kenya to move on with their lives after a colostomy. 

Support following a stoma

My medical negligence colleagues and I have significant experience in supporting individuals who have required ostomy surgery as a result of substandard treatment. We understand the challenges that can arise, and how people’s day to day lives can be significantly impacted. 

However, I see the positive impact of the specialist and tailored support that we are able to achieve for our clients who have stomas. 

As part of a legal claim we look to seek damages to support our clients with their rehabilitation, whether that be financial assistance, additional care or specialist medical intervention and therapies to help our clients to rebuild their lives. 

We can also assist with signposting to support services when needed in order to make a positive difference in our clients’ lives. 

At Irwin Mitchell we work with and support a number of charities providing valuable resources, guidance and community support. Colostomy UK was founded to make a positive difference for anyone impacted by any kind of stoma or stoma surgery. MASIC is a charity that provides support for women who have required stomas due to injuries sustained during birth. Bowel Cancer UK works to supports the lives of everyone affected by bowel cancer. The Bladder and Bowel Community, for which I am legal advisor, has a closed peer-to-peer support group with over 24,000 members. 

Find out more about Irwin Mitchell's expertise in supporting people following ostomy surgery linked to care issues at our dedicated medical negligence section. 

You can find out more about Gill's story via the BBC documentary The Stoma Swimmer.