A growing problem

Since 1995, the number of new cases of Crohn’s disease in Canadian children has almost doubled. Approximately 20 to 30 percent of patients with Crohn’s disease display symptoms before the age of 20. In fact, Canada has one of the highest rates of pediatric Crohn’s in the world.

As well as experiencing the typical gastrointestinal symptoms of Crohn’s, children and teens affected often experience growth failure, malnutrition, and pubertal delay. For a child who just wants to go to school, play with their buddies, and be “normal” Crohn’s can create some real problems.

“The biologic treatments are just so effective, they help kids get back to a normal quality of life.”

“Crohn’s disease can have a profound effect on a child’s life,” says Dr. Bob Issenman, Professor of Pediatrics at McMaster University and Chief of Pediatric Gastroenterology and Nutrition at McMaster Children’s Hospital. “During the diagnostic phase, there are many doctors appointments and procedures that can result in missed school and missed social and extra curricular activities.”

Pediatric Crohn’s patients can also miss large chunks of school after the diagnostic phase, when they have to attend doctors’ appointments, have further tests, or make visits to a clinic for infusion treatment.

Robbie’s Rainbow

After numerous visits to the doctor, and a serious collapse at home, Robbie Murray was diagnosed with Crohn’s disease. “That was when I crumbled,” his mother, Kate, says. “Finally, somebody was realizing how sick my son was – but we still had a long way to go.”
Robbie was tried on a few treatments, but nothing was working.

After a while he was given a biologic therapy. It worked, and after a few treatments he began to show signs of remission. “It was miraculous,” says Kate. “The boy that we once knew came back to us, it was like he was waking up.”

When Robbie and Kate encountered a child whose family couldn’t afford the adequate treatment, they knew they had to do something. They sat down as a family and had a conversation that led to the creation of Robbie’s Rainbow, a charity that gives children access to expensive drug treatments not covered by private or provincial health plans and provides families with factual and reliable information.

Over the last five years, Robbie’s Rainbow has raised over $300,000, which has helped over 127 children receive critical treatments and care. The charity has also teamed up with the Canadian Digestive Health Foundation to create resource guides to provide parents and teachers with all of the relevant information about Crohn’s. “The ‘Blackboards and Bathrooms’ guide educates teachers and provides them with some tips on how to create a positive environment for children with Crohn’s disease,” Kate says.

Another helpful resource is ‘You, Me and IBD’, an educational magazine for children, teens and parents that shares inspirational stories, educational information and celebrates inspirational youth within the community.

Treatments offer hope for pediatric Crohn’s

There are some effective treatments currently available to treat Crohn’s disease, and a child or teen affected can achieve a good state of health as they transition into adult life.

Treatments can be nutritional or medical and may include an anti-inflammatory pill; steroids, which are effective for short-term control of a flare-up and are used to induce remission but not to maintain remission as they can often inhibit growth; immunosuppressants; or biologics, which are usually prescribed after all other drugs have been tried and have not been successful, or the disease is very severe.

“The biologic treatments are just so effective, they help kids get back to a normal quality of life,” says Dr. Issenman. “It has an enormous impact on every domain of a child’s life when the disease is fully treated.”

Biologic treatments also reduce the need for hospitalization and surgery in children affected by Crohn’s disease.

Don’t let Crohn’s disease hold you back

Clinton Shard was 12 when he was diagnosed with Crohn’s disease. For a youngster who was into all kinds of sports and outdoor activities, the illness had a devastating effect. His lowest point came over Christmas and New Year’s in 2007, when he was hospitalized for two months.

In March 2009, Clinton was prescribed a biologic medication and things started to look up: he was feeling fit and healthy again. He enrolled in his school’s Outdoor Leadership program, and when he heard that fellow Crohn’s patient Rob Hill was planning to climb Mt. Kilimanjaro to raise funds and awareness for the disease, Clinton knew he had to be involved.

“It was an arduous seven day trek up the mountain, but my struggle with Crohn’s disease definitely prepared me mentally,” Clinton, now 22, says. “Reaching the summit was such an emotional experience. It was at that point that I realized I wasn’t just doing this for other people, it was also to show myself how far I’d come.”

After the Kilimanjaro expedition, Clinton trekked with Rob Hill to Everest base camp, and he continues to do whatever he can to raise awareness and funds for Crohn’s disease. “Most importantly, though, people need to know that there’s life after being diagnosed with Crohn’s disease.”