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‘People don’t see what happens when I arrive home’: The hidden reality of living with IBD
Nearly 180,000 Australians are living with inflammatory bowel disease (IBD), yet much of what conditions like Crohn’s disease and ulcerative colitis demand happens completely out of sight.
For Perth student paramedic Alessia Maio and mum Kelly Bongiovanni, IBD has entered their lives in very different ways. Alessia has spent much of her twenties navigating Crohn’s disease herself, while Kelly has watched her young son Xavier grow up around hospital admissions, medications and an illness that can interrupt childhood without warning.
Their experiences have also brought them together. What began as a connection through IBD has grown into a close friendship, with Alessia describing Xavier as her “IBD bestie” and little brother.
This September, they are sharing their experiences as part of Crohn’s & Colitis Australia’s Live Fearless Challenge, helping make visible what life with IBD can actually look like.
## ‘People don’t see what happens when I arrive home’
From the outside, 25-year-old Alessia Maio’s life is busy.
She is studying to become a paramedic, volunteers with children and families at Perth Children’s Hospital and is the Co-Chair of the WA Ministerial Youth Advisory Council.
What people often don’t see is what happens once she gets home.
“I mostly live a normal life on the outside, but I am quite often in pain,” Alessia says.
“People don’t see what happens when I arrive home. The fatigue, pain, tears when on the toilet, passing out on the toilet, excessive bleeding and drops in blood pressure, and the ‘why me’ meltdowns that occur often.”
Alessia first began experiencing perianal issues at age 16. She had Ross River Virus in Year 12 (2019) and was ill for the whole year. The following year, she began developing severe stomach pain, bleeding, urgency, severe perineal fissures, loss of appetite and needing the bathroom up to 30 times a day. She was diagnosed with Crohn’s disease at 21 after 9 months of being told it was “gastro” by doctors.
Her small bowel Crohn’s is now in remission, but recurrent perianal disease continues to require surgeries. She has undergone three surgeries this year and attends hospital every four weeks for biologic treatment.
“The surgeries and procedures have truly been endless,” she says. “I am a frequent flyer at the hospital’s day surgery unit.”
The unpredictability of Crohn’s has affected far more than her health. Alessia has had to pause work and study for months at a time and has missed birthdays, a family wedding, work shifts, driving lessons and plans with friends.
It has also affected her relationships.
“I have had people accuse me of making it up or faking my disease because I look okay on the outside,” she says.
One last-minute cancellation during university contributed to the breakdown of her first friendship group.
“I had been out a few days prior and the group felt it was impossible for me to become so unwell in the span of a couple of days,” she says.
“Some people cannot comprehend the unpredictability of this condition and how quickly symptoms can come about.”
As difficult as those experiences have been, Alessia says they have also shown her who will stay.
“It has almost been a blessing in disguise because it has shown me who my real friends are, the people that will show up regardless, even if you are stuck in bed or in hospital. The people who will see you and show up at your best and your worst.”
Her own experiences as a patient have now shaped the career she wants to build. Crohn’s inspired Alessia to begin volunteering at Perth Children’s Hospital and pursue paramedicine, where she hopes the empathy she has gained from years spent on the other side of the hospital bed will help her care for others.
It was also through IBD that she met Kelly and Xavier.
“We met through her son, Xav, and what started as a connection through Crohn’s and Colitis has grown into something so much more,” she says.
“Kelly has become like family to me and is such a light in my life. Xav is my IBD bestie and he is like a little brother to me!”
## ‘I want people to see Xavier as a little boy first’
Ask five-year-old Xavier Bongiovanni what he would do with the perfect day and his priorities are straightforward.
“Go on holiday and I want to play with my toys all day and I want to have an icy pole and that’s all,” he told his mum.
Xavier loves dinosaurs, robots, slime, swimming, dancing and mixing “potions”. At a recent K-pop event, he had access to a private balcony but wanted to be downstairs with his friends instead, dancing in the crowd with a fairy bubble wand.
“That is Xavier,” Kelly says. “He wants to be where the fun is. He wants to be with his friends. He wants to dance, laugh, play and be part of everything.”
But IBD can interrupt those moments without warning.
Xavier began showing symptoms when he was around 18 months old, when Kelly noticed bright red blood in his nappies.
“I have four kids, and I knew that the quantity and type of his bowel movements were not normal,” she says.
The family was initially told Xavier could have a dairy intolerance. But the bleeding continued. Months later, he became feverish, dehydrated and so unwell he was barely responding when his family tried to wake him.
“After having four children, I knew this wasn’t normal, but I felt like the medical teams we saw weren’t really listening to me,” Kelly says.
“That was one of the hardest parts, knowing in your gut that something was wrong with your baby, but not being heard.”
Eventually, a GP listened. Further testing led to an urgent referral to Perth Children’s Hospital and Xavier was diagnosed with ulcerative colitis when he was just two.
“When we finally found a GP at our local surgery who listened, I think I cried more from the relief of being heard than I did when we were told Xavier had IBD,” she says.
Since then, the family has navigated repeated hospital admissions, procedures, steroids, changing medications and, most recently, infliximab infusions.
“What people don’t realise is how constant it is,” Kelly says. “Even when things seem ‘normal’ on the outside, there is always something being managed in the background.”
That can mean blood tests, hospital appointments and medication changes, but sometimes the impact is as simple as having to leave a birthday party early.
“He was devastated,” Kelly says of one recent flare. “He just wanted to stay, play and be like the other kids, but his body wasn’t allowing him to.”
“You pack spare clothes and try to be prepared, but emotionally, nothing prepares you for watching your child miss out on something so simple and special.”
On another occasion, Xavier was playing with his cousins when he went to the bathroom and discovered he was bleeding heavily. After being cleaned up, changed and comforted, he simply wanted to return to the clay project they had been making together.
That resilience is one of the things that continually surprises his mum.
“I would want people to see Xavier as a little boy first,” Kelly says.
“A bright, funny, energetic child who loves his friends, loves to dance, loves to laugh and deserves to feel safe and accepted, even on the days his illness makes life harder.”
## Making the invisible visible
For Alessia, living with Crohn’s has meant learning that appearing well and being well are not necessarily the same thing.
She says she wishes she had understood earlier that receiving a diagnosis did not mean giving up on the future she wanted.
“Crohn’s is a part of my story, but it is not the whole story,” she says. “It has been a speed bump, not a roadblock.”
For Kelly, greater awareness is about the world Xavier grows up in.
“I don’t ever want him to feel embarrassed, bullied or teased because of his toilet behaviours, hospital admissions or time away from school,” she says.
“I want him to grow up feeling confident to talk about it, not hide it.
“Because at the end of the day, this is just one part of who he is. It doesn’t define him.”
_This September, Alessia and Kelly are taking part in Crohn’s & Colitis Australia’s Live Fearless Challenge, using their own experiences to help others understand the parts of IBD that are so often hidden from view._
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chronic illnessInflammatory bowel diseasewomen's health
by Sophie Muir
22 hours ago
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