Jake’s story

From birth, Jake suffered with bowel complications. Long hospital stays meant he missed lots of childhood experiences and struggled in school. ERIC helped his family throughout their journey to ileostomy surgery, and beyond - as told here by Jake's mum, Danielle.

Jake shared his story as part of ERIC's 2025 Christmas Appeal and, as Jake loves sports, we arranged for him to meet former England Rugby Captain Lewis Moody. Watch the video here.

Lewis Moody and Jake smiling and holding ERIC poo mascot

Jake had bowel problems from birth and was in and out of hospital, both unable to go to the toilet and having toileting accidents. For years, nobody was sure why.

Aged five, Jake was diagnosed with Coeliac disease. He went on a gluten-free and dairy-free diet. He was put on medication too, but it didn’t solve the problem.

Over the years, Jake was in hospital a lot due to impaction – sometimes for up to two months. He missed lots of school, playdates, parties and playing football which he loved.

In Primary school, he would sometimes soil himself due to overflow. Teachers wouldn’t pick up on it and he wouldn’t tell them because he was embarrassed. He was literally sat in it in class. He’d come home absolutely covered. It was a bit of a struggle.

Surgery

It was eventually decided Jake could have an ACE stoma formed. Aged 10, he stayed in Alder Hey Children’s Hospital over Christmas for the operation.

Unfortunately, he still became regularly impacted and was admitted into hospital every six weeks for a while. He was also getting infections where his tubes were.

Tests eventually concluded that the problems were higher up in his bowel and that an ileostomy would be best - which is an operation to bring part of your small bowel through an opening in your tummy to form a stoma.

Jake has an abnormal bowel: pancolonic hypomotility, which means his gut doesn’t work properly at moving food and drink along.

He had ileostomy surgery just before high school, aged 11.

How ERIC helped

During a long hospital stay, another parent on the ward told me about ERIC. I went on the website, then contacted the helpline.

It was before the hospital started investigating more and they weren’t sure what was happening or where it was leading. At the time, I felt like it was all my fault. So it was reassuring that this was a common thing.

They gave me advice, including about Movicol doses and what to ask at medical appointments. It was information I hadn’t known before.

ERIC also helped us to explain Jake’s needs to his school. And when Jake was told he would have an ileostomy, ERIC’s advice was really good and made us feel happier with the decision to have the operation.

Life after surgery

Jake’s surgery was hard and having an ileostomy took some adjustment. But it was a success and since, he has been able to do more things he enjoys including playing football and going out with friends. He’s also spent less time in hospital and is able to be in school more.

The ileostomy hasn’t been a complete fix, and it comes with its own problems. But through diet and medication, we can control it. Jake has off-days but nothing like he did before. It’s made a huge difference to his life.

Two months after his surgery, Jake walked up Mount Snowdon to raise money for ERIC. He raised over £2,000.

Now, aged 14, Jake shares his experiences on his social media pages to help others in his position. He often tells people about ERIC.

Jake has also signed up for ERIC’s Young Champions programme to help raise awareness of bowel and bladder issues and to be part of solutions, improving awareness so that conditions are better understood and young people like him get the support they need.

We are thankful to ERIC for the advice we needed throughout our journey.

Jake and his brother

This Christmas, Jake is supporting ERIC’s Beyond The Bag campaign, where we’re amplifying the voices of young people living with stomas and showcasing the positive impact stoma surgery can have on their lives.

Support our work

As a charity, ERIC supports thousands of families every year with all sorts of bowel and bladder issues, including children with stomas.

Bowel and bladder conditions still have a stigma attached, which can prevent people from seeking support. It shouldn't be this way. Here at ERIC, we're working hard to help break the stigma around wee and poo, to ensure nobody suffers in silence.

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’d like to develop more stoma related resources for families, but we rely on support from people like you to keep our vital work going.

Can you help children and their families living with bowel and bladder conditions to have a happy, healthy Christmas this year?

As told to ERIC by Jake's mum Danielle.