Good mates: IBD advocate Madi with friend Amy in year 8. Photo: Canberra Hospital Foundation.
Imagine being a young person and never knowing when you’ll need to run to the bathroom. Imagine the fear of having an accident in class, or not making it through a friend’s birthday party.
This is often the reality for children living with Inflammatory Bowel Disease (IBD). With more than 80 young patients treated at Canberra Hospital in the past five years, some diagnosed as young as 18 months old, the number and needs are growing.
On Sunday 18 May, the community can turn empathy into action by joining the Mighty Guts Walkathon. Every kilometre walked in the event at Patrick White Lawns, Lake Burley Griffin, will fund practical support to help young patients feel seen and less alone.
Paediatric gastroenterologist Dr Pearl Chan says IBD affects far more than digestion.
“The constant pain, fatigue and unpredictable rushes to the toilet can be embarrassing and isolating,” Dr Chan says.
“Steroid treatment often causes weight gain and frequent hospital visits trigger anxiety and depression. Many kids skip parties or sports because they’re terrified of a flare-up.”
To ease the burden, Dr Chan and paediatric nurse Esther Fernandez are compiling IBD Comfort Packs, curated kits containing heat packs for cramps, scented drops for bathroom anxiety, pill organisers, wipes and sanitiser. All funds raised from the walk will go toward the packs.
“IBD Comfort Packs can make a significant difference for kids undergoing treatment,” Esther says.
“These packs acknowledge their unique needs and provide practical items to assist with daily struggles. These packs offer much-needed relief and a sense of care, making the treatment process a bit more bearable for young patients.”
IBD advocate Madi celebrates her 19th birthday with friend Amy. Photo: Canberra Hospital Foundation.
The team says these packs say to a child: “You’re seen, you’re supported, and you’re not in this alone.”
IBD advocate, Madi, has been living with Crohn’s disease since she was eight years old. She knows the difference a seemingly small item can make in terms of comfort.
“I absolutely love my heat pack,” Madi says. “It is such a relieving thing for me. Even when I don’t have a sore tummy but am feeling anxious, my heat pack provides me with comfort.
“I used to take my hot water bottle to the hospital every single time I had to be admitted, and it really helped me feel safe and content in such an unstable situation.”
Living with IBD isn’t just physically painful, it’s emotionally isolating. Research shows up to 65 per cent of young patients experience significant emotional distress due to the stigma and unpredictability of their illness.
Dr Chan says we can’t take their IBD away, but we can walk beside them and let them know their community is behind them every step of the way.
“Every step tells a child they’re not alone,” she says.
“Let’s lace up and walk beside them.”
The Might Guts Walkathon is on Sunday 18 May 2025, from 9:30 am to 12 pm, at Patrick White Lawn, Lake Burley Griffin. You can walk 5 km or 2 km (dogs on a leash welcome). Entry is $10 per person or $30 for a family (2 adults + 2 children), kids under three are free. A charity barbecue will run from 9 am, with all proceeds funding Comfort Packs. Book tickets here.
