“Just once, I wanted to tell someone to stop touching me. I was tired of people touching me. Did you know that’s what Britney Spears said right before she took an electric razor to her scalp?”
Emma Chapple wrote those words on her blog, in reference to the multiple medical professionals who had to poke and prod her body to treat her surgical wound. Those words also give you a sense of Emma’s wit, something she’s come to rely on through the struggles of life with Crohn’s disease.
The 23-year-old aspiring lawyer from Halifax has lived with Crohn’s since the age of 13. Her initial diagnosis was a “mild” case of Crohn’s, and daily doses of mesalazine were enough to keep the disease at bay for two years. A few weeks after Emma started 10 grade, she was hospitalized because of a flare-up and switched to a biologic treatment. The next year brought periods of remission, but it was spotty at best.
After turning 16, medications started to fail entirely, and Emma’s disease got out of control.
“My GI began asking other doctors from around the world if they had ever seen symptoms like mine,” says Emma. “I started getting complications in other parts of my body – my heart, my kidneys, my joints, you name it.”
Emma was presented with the possibility of surgery to remove her colon. Ready to jump at any option that could help her feel better, she told the doctors to take it out.
“The really weird thing is that everything else in my body went back to normal after that, almost like my colon was poisoning me from the inside out,” says Emma. “I had an ileostomy, but they left my rectum behind. They told me it was to keep the option for ostomy reversal open, but they also said because I was a young woman they didn’t want to operate in my pelvic region because it can increase the risk of infertility.”
But the residual rectum would prove problematic. Emma was in her second year of university when the rectal bleeding began. That necessitated a second surgery to remove the rectum, and that led to a wound that became infected almost immediately after the operation.
“I had home care nurses coming to my apartment for a while, and I felt so embarrassed when I had to tell my roommate what was going on. I eventually changed it so I could visit a clinic near campus between classes instead.
One morning while I was waiting at the clinic, an older man looked at me and said, ‘You look too healthy to be here’. I replied, ‘But I’m here’.”
In her final year of university, Emma juggled coursework with wound care. She would visit the clinic when it opened at 8:00 a.m., then waddle to class with 50 cm of medicated gauze packed into her backside.
Through the challenges, Emma used humour to help her cope, and has taken the stage for stand-up comedy performances.
“I get up and open with something like, ‘Hey guys! Fun fact, I don't have a butthole.’ People are immediately engaged and want to know more. They ask how it happened, how I deal with it. It turns into a give and take, and it becomes easier to talk about it, which sort of takes the power from the disease and gives it back to me.
Comedy is like my therapy. It’s a way for me to reconcile with all I’ve been through. There are a lot of subtle, awkward moments that come from being sick that make for a funny story – like the time I was asked to have my rectal wound photographed for educational purposes, which means that somewhere a medical student is probably looking at a picture of my butt. That’s so absurd! All I can do is laugh about it.”
Though she is young, Emma has gained wisdom through her adversity, particularly when it comes to body image.
“It took me a few years to accept having on ostomy. The surgery happened so quickly and at a time when your body image is already so vulnerable,” she says. “I remember hearing my male friends make offhand comments about women’s bodies and feeling like they could never know I had an ostomy. That feeling went away as I got older and surrounded myself with better people.”
Time not only brought acceptance of her ostomy, but eventually healing for her rectal wound. Emma is now medication-free, back to working out regularly, and just completed a successful second year at law school.
“I’ve learned these last few years that planning life meticulously will rarely work out. I’m learning to take things a little easier and not put as much pressure on myself,” Emma says. “I’m trying to accept that whatever will happen will happen at its own pace.”