Stoma awareness campaign encourages children to speak out about bowel and bladder health this Christmas

ERIC, The Children’s Bowel & Bladder Charity is leading a Christmas stoma awareness campaign to help break the ‘poo taboo’.

It has the backing of rugby stars Lewis Moody and Cassidy Bargell, and Jake, a sports mad teen living with a stoma. He wants to get more young people talking about wee and poo.

1 in 9

Currently 1.5 million children in the UK (that’s 1 in 9) live with a bowel or bladder condition.
For some, this will ultimately result in them requiring a stoma.

Around 205,000 people of all ages (1 in 335) in the UK are currently living with a stoma.

Each year an estimated 13,500 stoma surgeries take place in the UK. In children the most common reasons for colostomies and ileostomies to be formed are anorectal malformations, Hirschsprung’s disease, inflammatory bowel disease, and necrotising enterocolitis.

Occasionally they are also formed for chronic constipation. These conditions have a huge impact not only the child, but on their family too.

Stomas, somewhat unfairly, are sometimes seen as a ‘last resort’. But for many people who have had them, they say it has given them their freedom back and enabled them to live a fuller life.

ERIC runs a helpline that supports families with all sorts of bowel and bladder issues, including complex cases like these.

Jake’s stoma story

From birth, Jake (now 15) suffered with bowel problems. Long hospital stays meant he missed childhood experiences and struggled in school. ERIC helped his family throughout their journey to ileostomy surgery, and beyond. He’s now using his experiences to help others through social media.

Jake is sports mad, so we arranged for him to meet with former England Rugby Captain Lewis Moody to create a special film for ERIC.

In it, they visit Lewis’s home turf, The Recreation Ground, home of Bath Rugby. They discuss Jake’s ileostomy surgery, how his stoma has impacted his life, and his journey back into doing the sports he loves again. Watch the video here.

Lewis, who lives with ulcerative colitis but does not require a stoma, was impressed with Jake’s resolve and openness and said:

I went through ulcerative colitis when I was younger and I was really nervous telling anyone to the point that I didn’t, which created far more stress for me and amplified the symptoms of my colitis.

After hearing about the work that ERIC does and seeing first hand Jake’s courage in speaking out about his condition, Lewis is supporting our Christmas Appeal this year.

We need your help to offer support and advice to families and break the stigma around bladder and bowel conditions so that young people like Jake experiencing a condition can feel confident to speak out about their conditions and lead a full, active life.

Cassidy’s stoma story

Cassidy Bargell, 25, is a scrum-half for the USA women’s rugby union team. In late 2020 she began to suffer alarming symptoms but played through her pain. Eventually, in November 2021, she underwent ileostomy surgery to remove her colon and create a stoma, an opening in her abdomen to allow waste to pass.

Just a few months later, she was back playing rugby, wearing an ostomy bag. In 2022 she gave an inspirational TED Talk, No Colon Still Rollin’, detailing her life after surgery. And she’s been an outspoken advocate on social media about life with a stoma.

This year, Cassidy is supporting Jake and ERIC, by participating in ERIC’s Beyond the Bag social media campaign, helping us to clear up some common misconceptions around stomas.

Beyond the bag: Removing stigma around stomas

There are a lot of misconceptions about stomas, for example:

You can’t play sports with a stoma

You can’t go swimming with a stoma

Only old people have stomas

You can’t go to concerts / social events

You can’t wear fashionable clothes with a stoma

Stomas are always permanent

These are all wrong, which is why ERIC has released a new video featuring Jake, Cassidy, Mollie Pearce (TV star, fellow ostomate and longtime ERIC supporter), and some other young people who live with stomas ‘busting’ these myths.

In it, they describe the frustrations they face when talking to others about their stomas, and the things they wish people understood better.

There remains a taboo around talking about wee and poo. This might be why some people put off seeking help in the first place.

ERIC wants to break this stigma. We want to talk not only about stomas, but about bowel and bladder health more generally.

We want to encourage people to check their wee and poo, speak up if something doesn’t look right, and seek help.

Watch the myth-busting film here:

Sunni Liston, Paediatric Bowel & Bladder Nurse at ERIC, said:

Stomas are, somewhat unfairly, often thought of as a last resort but for many children and young people who have them, they say it’s given them their freedom back and enabled them to live a fuller life.

With this campaign we hope to provide a platform for the voices of these young people to be heard and highlight the positives around it, and the support available to families who need it. Nobody should suffer in silence.

Siân Wicks, CEO at ERIC, The Children’s Bowel and Bladder Charity said:

We are so grateful to Jake, all the young people, Lewis and Cassidy involved in this campaign for being so open in sharing their experiences.

There’s a stigma around wee and poo which prevents many families from seeking support, which can seriously harm children’s health in the longer term if issues aren’t dealt with.

ERIC is all about breaking down these barriers and encouraging all children and young people to be aware of their bowel and bladder health from an early age – but we need support to do this.

While health professionals offer the treatments, we provide the much-needed expert guidance and emotional support during this time to help them through what can be a daunting process, with our online resources and Helpline.

We hope we can rely on everyone’s support this Christmas to help us reach as many families as possible.

Visit eric.org.uk for more information.

Featured image via ERIC