After incredibly painful cramps, stomach pains and a trip to the emergency room, a 16-year-old Chloe was told she had a chronic condition known as Ulcerative Colitis.
When she asked what ‘chronic’ meant her mum replied grimly, “it means you’ll have it for life”.
For the now 28-year-old, being diagnosed with Inflammatory Bowel Disease (IBD) was life-changing and “horrendous”.
The Social Impact of IBD
IBD affects 80,000 Australians, presenting most commonly in people when they are aged 15-30 and in the prime of their lives, balancing a career, university studies, a social life and family.
As is not uncommon with IBD, the diagnosis triggered Chloe to be diagnosed with depression and it impacted her socially.
Growing up in Canberra, Chloe tells Yahoo Lifestyle that she played soccer with her friends and also competed at states and nationals as a junior rower.
“I was creative, had lots of friends at school and lots of pets at home, along with my two brothers and parents,” the Sydney Radio Producer tells us. “I was a happy teenager and thought of myself as pretty tough from my involvement in sport. I had a mentality of pushing through pain, which was helpful during my diagnosis, but also complicated things as I didn’t know when or how to ask for help.”
Chloe drifted from her group of friends and isolated herself at a time when teenage girls are typically quite dependent on their social circle.
Chloe began to skip school and abused pain medications she was taking to get through the day.
Finding the Right Treatment
In the years following her diagnosis, Chloe tried many treatments.
Just before she resorted to surgery, which would create an opening in her colon and leave her with a colostomy bag, she tried infliximab three years ago, an in-clinic infusion which reduced her inflammation significantly within 24 hours.
Chloe has been on infliximab ever since and six months ago switched to a new at-home injectable version of the treatment, Remsima® (infliximab) which has been made widely accessible for adults living with Inflammatory Bowel Disease (IBD) on the PBS.
The at home treatment has enabled Chloe to have a lot more freedom and not need to take time off work to go into hospital for her infusions.
Diet and How To Help
Chloe says that while many people assume she has a restricted diet, she doesn’t!
“I tend to eat and drink to make myself feel good and that usually ends up being a mix of healthy and some unhealthy foods,” she says.
“I’d like people to know that each time a chronically ill person gets sick or has a flare, it can be a completely different experience each time.
"Have patience and ask how you can help. If they don’t know how you can assist them, then help them figure out how they can utilise their network to support them through their next body battle.”
Coping with IBD
Chloe’s philosophy on living with a chronic illness is that laugher sometimes is the best medicine.
“You’ve got a window into a world that most 'normal' people won’t see,” Chloe explains.
“It’s a pretty awful world sometimes, but it can offer incredible insights into who you are. This will help you in other aspects of your life. Also, it’s embarrassing to talk about poo! I get it! So joke about it… have names for your doctors and specialists. I called my first specialist the 'Dr H-bomb' and the other 'Stock-dawg'. You’ll need to figure out healthy coping mechanisms. Laughter is a good one!”
Bright Future Ahead
“It’s been over 12 years since I was diagnosed with Ulcerative Colitis” says Chloe. “I’m still active, have a tight network of friends, a great job that is challenging and I’ve only become closer with my family.
The biggest difference is that I’m very much in tune with how my body feels, physically and mentally. I’ve become a fantastic medical advocate for myself.
For me, I can thrive and live totally normally - when I take care of myself. Due to the immune suppressing medication and mini flares, I can feel a cold or even a bad night’s sleep more than the average person.”
“I know when and how to ask for help now. I go out and enjoy myself, but only when I know my body can handle it.”
Mental health support for yourself or a loved one can be found by calling Lifeline on 13 11 14, Mensline on 1300 789 978, or Kids Helpline on 1800 551 800. Online support is available via Beyond Blue.
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