How Crohn’s disease, colitis sufferers can overcome an invisible illness to get back into sport

Sienna wears an ostomy bag, which is sometimes visible and can attract attention from other kids.

Loading

“I bought a skipping rope last year. I think I’ve used it about five times and then I just couldn’t … some kids like to watch, and I think that’s the most embarrassing thing of all,” she says.

“I’m not embarrassed with my bag … but kids are judgmental when they see someone different.”

She is not aware of any classmates with IBD, and is the youngest member in all the local support groups she belongs to.

Sienna talks openly about her experiences living with ulcerative colitis on her Instagram, @thatgirlwithibd, where she has connected with other young people like herself around the world.

In sharing her life openly, she hopes to inspire others to embrace their differences.

“Don’t let people take away your joy just because you’re different. If you’re weird, be weird,” she says.

Seeing what you can do

Associate Professor Greg Moore, a gastroenterologist and head of IBD at Melbourne’s Monash Medical Centre, says certain symptoms, like fatigue, can make it difficult for people to participate in sport.

But with the right treatment, he says, “there’s no reason you can’t exercise with Crohn’s or colitis”.

“We’re very much about, engaging with life to the full, being fearless, and getting out there and seeing what you can do.”

Treatment for IBD depends on factors such as severity, but can include surgery, medication and hospital-based infusions.

But while IBD can make it difficult for patients to participate in athletic activity, exercise itself can be an effective therapy for managing its symptoms and improving patients’ quality of life.

“Exercise is very important. It’s an anti-inflammatory in itself, so can help with fatigue [for example],” says Moore.

‘It’s not as bad as I thought’

For 12-year-old Steph Cassar, an ulcerative colitis diagnosis two years ago has not stopped her love for sport.

“I didn’t know what to think at first. I was really, really sad. I thought my life would change, and it has, but it’s not as bad as I thought it would be,” the Melbourne student says of the diagnosis.

While she occasionally has to sit out from matches or training (before treatment, playing sport triggered bleeding), Cassar maintains a busy sport schedule playing indoor cricket, AFL and indoor soccer. Her favourite subject at school is PE.

Loading

“I was nervous to start sport again,” she says, but “I love to hang out with my friends and teammates”.

Cassar’s mother, Louise, sees sport as an equaliser for her daughter.

“When Steph gets out there and plays footy, she’s just like all the other kids. She doesn’t feel like she’s different,” she says.

For Louise, dealing with judgement from other parents, rather than managing her daughter’s disease itself, can be toughest.

“I remember one of the parents saying to me, ‘Steph hadn’t been at training.’ I explained she wasn’t feeling good, and they said, ‘Oh, she looks fine to me’.”

“That really upset me,” says Louise.

Gabriella Lay, 25, was diagnosed with Crohn’s while doing her HSC.

“My symptoms started because I used to dance so much and whenever I would dance, I would have abdominal pain. It was really tough,” she says.

Loading

The stress of year 12 exacerbated these symptoms, and she struggled to eat.

Now in remission (Lay underwent surgery in 2018), she has the occasional flare-up but is mostly fine. In recent years, she’s returned to dance classes and also enjoys Pilates and yoga.

“The pain is how I got diagnosed through dancing, so going back to it was quite nerve-racking because I just wasn’t sure how my body would react,” she says.

“It felt really emotional because I loved it so much growing up, it was my whole personality and I thought maybe I would do something with dancing, and then once my Crohn’s hit, it made me reconsider the path I wanted to take with my career.”

Today, Lay works as a marketing and communications coordinator at Sydney Dance Company, a job which allows her to indulge her passion, albeit not in the way she imagined as a young girl.

While Lay says awareness about Crohn’s is still low, conversations around it are growing.

“It’s not a very glamorous disease, so it’s not something you want to talk about with people. There’s definitely a stigma around it, but I think part of talking about it is what de-stigmatises it.”

Make the most of your health, relationships, fitness and nutrition with our Live Well newsletter. Get it in your inbox every Monday.