World IBD Day - Shaun's Journey

May 19 is World IBD Day, when the globe comes together to help raise awareness of Inflammatory Bowel Diseases such as Crohn’s and Colitis. 

Earlier, we caught up with the IBD team at the Royal Hospital for Children who do incredible work to help young patients, parents and caregivers understand their diagnosis, receive the best possible treatment, and feel reassured that their condition will not define them. 

And Glasgow Children’s Hospital Charity are right behind them to support the ongoing effort to make more breakthroughs in IBD research while also making kids’ hospital stays easier, funding initiatives like the Teddy Hospital, a form of play therapy to reduce anxieties. 

Carol Anne and her son, Shaun, have recently been coming to terms with the 12-year-old's Crohn’s diagnosis but, thanks to the first-class care of the team, the understandable anxieties have subsided to reveal a simple yet positive message. 

“With the support, everything will be okay. It’s traumatic, it’s life changing, but everything will be all right.” 

Shaun's diagnosis

IBD conditions can initially present with symptoms that seem unrelated and that was the case for Shaun, who was 10 when his mum started to notice something different.  

She said: 

“Shaun’s problems started in lockdown two years ago. His mouth got swollen, his gums were inflamed, and I was going between his GP and the dentist. 

“He got four or five courses of antibiotics between the GP and the dentist, and nothing happened. We were referred to a dermatologist and after emailing some pictures to her she phoned me back quickly and said, ‘oh my goodness, could you send a stool sample?’ 

“The corners of his mouth had split open, so I thought he had an infection, and it was the dermatologist who noticed it straight away. It was the last thing I expected. 

“His inflammatory markers were through the roof, and we were referred to gastroenterology. He was seen by Dr Hansen and was booked in for a colonoscopy, an endoscopy and got biopsies done. And it came back that he had Crohn’s.” 

'So lovely I cried'

It’s only natural as a parent to begin worrying from that point on but Mum Carol Anne could thankfully lean on the brilliant IBD team at the Hospital. 

“The IBD nurses have been wonderful. They’re kind, approachable and informative. They make you feel at ease because I was thinking, ‘oh my God, has he been struggling all these years? Is there something I could have done?’ 

“It was a bit of an emotional time. Vikki is brilliant and she’s so lovely I started crying. The encouragement, the reassurance – it was just nice to hear Shaun will be okay. 

“Although he has this illness for the rest of his life, he’s going to be all right. 

“I need to be strong for Shaun because he is a bit worried and knows he’ll be taking tablets for a long time, possibly forever. So I need to be positive for Shaun. 

“Vikki showed me a great website and gave me a magazine that helps. I also look at IBD stories online. That’s what gets me through.” 

Our impact

Funding from Glasgow Children's Hospital Charity is helping young patients with IBD from across Scotland who on some occasions travel many miles to receive treatment at our special children’s hospital. The ground-breaking CD-Treat diet, designed to avoid side-effects caused by liquid diets, was part-funded by the Charity. 

“I wasn’t aware of the projects Glasgow Children’s Hospital Charity funded before, but I know now from looking it up and from Vikki and feel grateful to know that the extra layer of support is there. 

“I would just like to thank Dr Jury, the dermatologist, Dr Hansen, and all the IBD team – Vikki Lorraine, Lee, and Lisa. They’ve all been so wonderful.”