Robbie Murray found out the hard way that fighting Crohn’s disease is a life-long battle. His mom shares his story.
When Robbie Murray was five-and-a-half he got mono. Shortly after that, he started avoiding foods he used to love. Yogurt and other dairy products became repulsive. His stomach often hurt and sometimes he had to lie down after meals because he was in so much pain. Within a year, he was literally wasting away before his mother’s eyes. By the time Robbie’s sixth birthday rolled around, he was a shadow of the normal little boy he’d been. Lethargic and prone to projectile vomiting; he’d lost 10 percent of his body weight and he was having up to nine mucousy bowel movements a day.
Doctors told Robbie’s mom, Kate, that her son had a bug. They played with his diet, suspecting a food allergy. Because his intestines were so sore, he got a bit better when coarse foods were eliminated – but never for very long. For months, Robbie’s health had peaks and valleys and Kate watched helplessly, trying to figure out what was going on. “Just getting a blood test was a real pain,” admits Kate.
Then one day Kate watched helplessly as her little boy screamed in agony on the couch. “I’d never heard my child make that kind of noise,” Kate says. “It was just awful, he was so consumed in pain. That was the worst day we’d ever had.” She rushed Robbie to the hospital and was finally referred to a paediatric specialist who performed a battery of tests – all of which took weeks – and eventually referred her to SickKids Hospital in Toronto.
Robbie was finally diagnosed with Crohn’s disease, a form of Inflammatory Bowel Disease (IBD) that causes the intestines to become inflamed, form sores and bleed easily, from the mouth to the anus. (Ulcerative colitis, a similar disease, affects only the colon.) There is no cure, no known cause, and little understanding of the pain and chronic suffering IBD patients have to cope with every day. Patients deal with abdominal pain, cramping, fatigue and diarrhea.
As Kate looked at images of her six-year-old’s intestines, riddled with angry-looking lesions and pus, she was horrified but also relieved. “Finally there was something I could do,” she says. “I wasn’t some hypochondriac mom. All that time, I’d felt like I was going crazy – like, someone listen to me, there’s something wrong with my son!”
IBD is more common than Multiple Sclerosis or HIV, and about as common as epilepsy or Type 1 Diabetes. Canada has among the highest rates of IBD in the world, affecting more than 200,000 people, 20 percent of whom are children. And, says Dr. Aleixo Muise, a clinician scientist who studies IBD at the University of Toronto, it’s on the rise in kids under nine, especially among the children of first- generation Canadians.
“The most important thing to remember is that blood in the poop is never normal,” says Dr. Muise. He says that while it is possible for adults to have bloody stools from hemorrhoids, that’s rarely the case with children.
Robbie’s diagnosis, though key to his recovery, didn’t bring instant relief for his tummy. Crohn’s continued to attack his body from within. “The only thing I could offer him for the pain was Tylenol and one day he just looked at me and said ‘Mommy, what’s the point?’ ” says Kate.
His doctors put Robbie on steroids, which threw him into instant remission but came with unwelcomed side effects, including a swollen face and the risk of delayed puberty and osteoporosis. Next, Robbie tried methotrexate, but within a month the stomach pains were back and he started avoiding foods again and losing weight.
Finally, doctors recommended monthly infusions of a new drug called Remicade, which for some kids feels like an instant cure. Robbie wasn’t so lucky; it took 11 infusions, over seven long months, before he started to feel better. But he does feel better and his monthly drug infusions keep things that way.
Robbie is lucky. His father, Scott, has a good drug plan through work – but not every family can afford the treatments that have given Robbie his life back. On average, Remicade costs $20,000 a year. As the child grows, so does the cost.
When Robbie found out that some kids can’t afford drug infusions, he wanted to help. So he and Kate made hundreds of chocolate lollipops and sold them in front of a local supermarket, raising enough money to help one child, one time. That one-time fix has evolved into Robbie’s Rainbow, a charity Kate runs that helps kids with Crohn’s pay for treatment.
Outside the hospital, Kate is still fighting for her son. “Crohn’s is like having diarrhea every day of your life,” says Kate. Yet despite frequent meetings with his teachers, getting full access to the washrooms remains a problem at school. The result? Accidents. Robbie used to hide his underwear in embarrassment and during particularly bad times he had to wear a diaper to school. Yet still, his frequent need to “go” is viewed as disruptive in the classroom and treated like a behavioural problem.
“He feels like a nuisance. He’s not a happy kid going to school,” Kate says. Robbie missed 41 days of grade one and 82 days of grade two because of Crohn’s and since his immune system is compromised, he stays home when common bugs, such as Fifths Disease, are going around. At 8, he’s not where his peers are academically or socially, says Kate. Their dining room doubles as a classroom so Robbie can keep up with his school work. Siblings Colin, 6, and Jocelyn, 3, stand in as classmates.
Despite his illness and the lifelong challenges he’ll face, Kate describes Robbie as a trooper. He lives a pretty normal life now and he hasn’t had a flare-up since he was diagnosed. He’s in grade three. He skis, he’s in the swimming club and he just started taking fencing lessons. Her advice? “You know your child best,” Kate says. “You have to be his advocate and push through the politics of the health-care system to make sure he doesn’t end up in that emergency room.”
Published in March 2011.
Dana Dougherty Reinke is a freelance writer and mother of three in Oakville, Ont. Check out robbiesrainbow.ca to find out how you can help kids with IBD get the treatment they need.