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Katie’s story
Katie was in pain from constipation most of her life, and spent lots of her childhood in hospital. Aged 8, colostomy surgery seemed the best option – and it turned her life around. ERIC was a lifeline to support us throughout the journey.
As told to ERIC by Katie’s mum, Kelly.
Katie was seven months old when we first noticed her tummy ballooning, her face becoming blotchy and crankiness when she ate certain foods. She was also constipated and in pain.
Doctors suspected it was an allergy, but they didn't know which one. Katie went on a diet free from dairy, wheat, gluten and soya, yet she was still painfully constipated.
I worked with her childminder to document her eating, drinking and bowel movements, and she went to a continence clinic. We were repeatedly told she was moderately to severely impacted.
Aged three, Katie went through her first manual disimpaction under anaesthetic in hospital.
Watch the video below to find out more and keep reading below for the rest of Katie's story.
Toileting issues at school
Katie started primary school in nappies. Over the years, she missed school lots due to pain and other tummy problems. When she did make it in, teachers frequently rang asking me to collect her due to bowel flare ups which, amongst other problems, caused her tummy to distend. Katie loves crop tops but wanted to wear shirts 2 or 3 times her size, so you couldn’t see her swollen tummy.
Thankfully, school made home learning plans and teachers checked in daily. Her friends made her cards, too. She was a little hurt if friendship groups extended without her, but they’d run over and hug her when she returned.
Often, Katie just wasn’t well enough to be in school. By age 6, she was in hospital every four to six weeks for several days at a time, having Klean-Prep® for 8-litres.
During these times, when she wasn’t well enough to sit and write, she developed a love of reading. She also sent her classmates videos from her hospital bed, saying: “At the moment, this is my home. This machine here is feeding me what I need through the night, to make my tummy better.”
When Katie was 8, it became clear that surgery was the best option. We spoke to her about the options and, with such a mature head on her shoulders, she chose colostomy surgery herself, with our help. A colostomy is where part of your large bowel (colon) is brought out through an opening made in your tummy. The opening is called a stoma.
Katie told her surgeon: “My body needs a rest now. I want to go to school, learn and be around friends.”
Finding ERIC
A continence nurse told me about ERIC when Katie was a toddler. I called the helpline and said: “I don’t know what to do. My daughter’s tummy is distended all the time. I really need advice.”
I had a helpful conversation with ERIC’s children’s bladder and bowel nurse, who rang me a few times to check in.
Over the years, I contacted ERIC many times, especially when Katie was on Klean-Prep®. When we decided on colostomy surgery, ERIC advised what questions to ask the professionals, on things like the type of stoma and bag, medication regimes and Katie’s wellbeing. Having ERIC there to advise me or explain things that I hadn’t properly understood was absolutely fantastic.
I felt there wasn’t much other trusted information out there with exception of the medical team. Sometimes, we felt stuck. Reading things online sometimes made me worry, and I found that leaflets about colostomies often weren’t relevant to children. The hospital were fab, but while you’re waiting for surgery, you don’t necessarily have that main contact who can advise, and unfortunately, GPs don’t specialise in this field.
Knowing that ERIC was there was a lifeline. ERIC became that one source I knew I could trust for information, that I knew were supportive if I had a question. There are so many questions that people can’t answer. Even around doctors, I felt there was a bit of taboo around poo. I needed some advice from somewhere. It’s just lovely knowing that, where there are some areas that other people can’t help, ERIC can.
Surgery
Katie was very open and honest with the professionals. When the nurses opened books with pictures of stomas and asked how she would feel about having a bag on her tummy, Katie said: “If I don’t feel like I do now, I don’t care.”
She told the psychologist : “All I want is to feel well, so I’m happy for anything.”
Nothing phases Katie. She’s always had a grown-up head on her little shoulders. As surgery approached, her motivation to get out of hospital was to see a show we had booked for nine days later.
We went in for the surgery and she didn’t bat an eyelid. She just stood there while they marked her little tummy. I thought, maybe when she wakes up and sees a bag on her tummy, it’ll hit her.
After surgery, the first thing she said was: “Mum, can I go to the show next week?”
And 24 hours later, she was on her feet.
Over the coming days, she pushed herself to walk around the hospital – bent over at first, but determined. Her stoma started working and I learned how to change the bag. Katie even made a presentation from her hospital bed, so she could tell her class about her stoma.
She decided to name her stoma Diamond, saying: “Marilyn Monroe says diamonds are a girl’s best friend, and this stoma is going to help me.”
As a parent, I was very scared to look at it for the first time – you don’t know what you’re going to see. But the first time I saw it post-surgery, I thought, Is that it? It seemed so small.
After seven days, Katie was discharged - and we made it to the show. She was delighted.
Katie said: “Mum, after surgery, it hurt me when I was moving. But the pain didn’t feel like anything next to before my surgery.”
It was only after that she realised how much pain she’d been putting up with daily, for her whole life. It was sad, as a parent, to think that had been her normal.
Life after surgery
We quickly got used to Katie’s stoma as part of our lives. Katie is able to go to school more – 13 months post-surgery and she’s only had 2 absences. She loves school, being around friends, and learning. She has a routine with trusted members of staff at school and they’re caring and considerate. The medical professionals around her have been brilliant too - we work as a team.
Katie’s schoolmates have been supportive and she always speaks out, including presenting in various classes and show-and-tells about her stoma equipment. She writes in her reading diary at school using a pen with a poo on top, because she says: “Why should I be ashamed of it?”
Katie is so brave and has taken everything in her stride. Many children and young people cover their stoma bags as it feels more personal, which is fine, but Katie doesn’t as she says: “I’m happy with my bag.”
She’s worked with local theatres and an arena towards stoma-friendly toilets and is a Wellbeing Ambassador at school. She also has an Instagram page where she’s connected with other children with ostomies, to share experiences.
Having a stoma does mean you need to be more organised: I always have a bag with Katie’s changing equipment, and she is brilliant at thinking ahead like practicing for swimming lessons by trying out her bag in the bath. For me, those things are a small price to pay. Any tummy pain Katie experiences now is nothing compared to before, which is absolutely fabulous. A recent hospital review showed that everything is well.
We recently went to an ostomy day party at the hospital. Katie met other patients and their families. One mum asked why she was so happy with her stoma, as her son had struggled. Katie said: “Because my life is better with it.” That’s all she can see.
Katie celebrated Diamond the stoma’s first birthday with a party. We decked out our house with poo balloons and poo banners. Friends came round and we had a party to celebrate what a positive difference the colostomy has made to Katie’s life.
I’m thankful to ERIC for their support and advice throughout our journey.
Campaigning with Mollie Pearce
Katie shared her stoma journey on Instagram via her account, where she receives many messages from other families who are struggling with bowel and bladder issues.
ERIC asked us if we would be interested in sharing Katie's story as part of a video campaign with Mollie Pearce, a TV star who also has a stoma. As a big fan of Mollie’s, Katie was delighted to meet Mollie and record the campaign video for ERIC.
We actually first saw Mollie on the TV with her stoma right before Katie's stoma surgery. Katie said that seeing someone like her on TV with a stoma was really nice, it made her feel like she could be proud of her stoma too. Katie loved watching her on Dancing On Ice too – she even wrote her name on her stoma bag in support.
Katie was so happy after meeting her. We're also working to break that stigma, like Mollie has been doing so it's really lovely that we do that together, in support of ERIC.
As told by Katie’s mum, Kelly
(Treatment should always be tailored to the individual needs of the child and discussed with the care provider. Treatment should always be tailored to the individual needs of the child and discussed with the care provider. There is a wide range of treatment options, and a colostomy is not the answer for everyone, but as Katie's story shows, for the right child, at the right time, it can be life changing.)
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Thank you.
ERIC Summer Appeal
Help us raise £10,000 to fund our vital work with families.
Demand for our services has never been higher and we're facing a shortfall in funding which could impact our services. We desperately need to raise funds to keep that vital support for families going. Help us raise £10,000 to ensure children like Katie don't suffer in silence.
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