You are not alone
Inflammatory bowel disease (IBD) is an umbrella term for two disorders that cause inflammation and sores in the digestive tract: Crohn’s disease and ulcerative colitis. Canada has one of the highest rates of pediatric IBD in the world. Most alarming, the number of new cases of Crohn’s disease in Canadian children has almost doubled since 1995. But there is support to help you. Crohn’s and Colitis Canada has local chapters across the country so you can connect and share your experiences.
Early detection is important
IBD, and particularly Crohn’s disease, are progressive disorders. Research has shown that the earlier the disease is treated, the better the long-term outcome. “Children will have IBD for their full lives, and the disease is more extensive in children than in adults, affecting longer segments of their bowels. We need to intervene early with effective medications in order to change the course of the disease and prevent complications later in life,” says Dr. Eric Benchimol, Pediatric Gastroenterologist, Children’s Hospital of Eastern Ontario IBD Centre.
“Untreated inflammation of the bowel will also affect the child’s growth (causing them to be shorter) and bone development (causing osteoporosis). Once a child is beyond puberty, they won’t grow anymore. Beyond the age of 25, bone development no longer occurs. Therefore, we have a very limited window of opportunity to intervene, eliminate the inflammation of IBD, and prevent a child from being stunted or having osteoporosis later in life,” explains Dr. Benchimol.
Talk to your child’s doctor
It’s a good idea to take a list of questions and concerns to your child’s doctor appointment. Ask about:
• Your child’s growth and bone health
The doctor should be tracking your child’s height, weight, and body mass index (BMI), and can provide information about how to prevent malnutrition.
• The cumulative effects of steroids
Steroids are used short-term to rapidly reduce inflammation and control acute flares. The long-term use of steroids is not recommended as they can be associated with many side effects. It is important to let your child’s gastroenterologist know if your child has needed multiple doses of steroids to help with symptoms as it may be a sign that your child’s disease is not under control.
• The long-term considerations for living with a chronic illness
Studying abroad and travelling can be done-you and your child simply need to learn strategies to make it all possible.
Help your child thrive in school
School can be tough for any child but school for children with IBD is even more difficult. Doctor’s appointments, debilitating and embarrassing symptoms, side effects from medications and, fatigue can threaten their academic success. However, the Canadian Digestive Health Foundation and Robbie’s Rainbow recently joined forces to create Blackboards and Bathrooms, a new resource to helps educators better understand IBD. It highlights how symptoms and treatment can impact health, behaviour and academic performance and offers suggestions to help students with IBD thrive in the classroom – and life.
Apply for a post-secondary scholarship
Unfortunately, too many students with IBD are forced to delay completing college or university because of their disease. The AbbVie IBD Scholarship Program awards ten $5,000 scholarships annually to Canadian post-secondary students of any age living with Crohn’s disease or ulcerative colitis. This program eases some of the financial burden and empowers Canadians with IBD to live their lives to the fullest. Both parents and students can benefit from watching the Youth Webinar Series, presentations that aim to improve the lives of young people living with IBD.
Check out these useful IBD resources for families:
Crohn’s and Colitis Canada provides helpful information, videos, events and webinars on diet and nutrition, travelling, and more.
The Canadian Digestive Health Foundation empowers individuals to take control of their health. Free web seminars, videos, education guides and more on the disease, treatment options and how to live positively.
The Gastrointestinal Society has articles, videos, infographics, lectures, and more on all diseases and disorders of the GI tract. Contact them to get involved in health care advocacy and for printed resources, including pamphlets and the Inside Tract® newsletter.
The CHEO IBD Centre shares helpful information, events and resources for parents and kids, as well as news about IBD research.
AbbVie IBD Scholarship Program, brought to you by Crohn’s & Colitis Canada, awards ten $5,000 scholarships annually to Canadian post-secondary students of any age living with Crohn’s disease or ulcerative colitis.
Blackboards and Bathrooms helps educators understand the impact of IBD symptoms and treatments so students thrive and reach their academic potential.
You, Me and IBD is an educational magazine which features a variety of topics on IBD for children, teens and parents. The magazine is created by Robbie’s Rainbow, a children’s charity dedicated to improving the quality of life of children living with Crohn’s disease and ulcerative colitis.
My IBD Passport is a free, simple-to-use app that empowers people with IBD to better manage their disease. Parents can use the app to help their child track appointments, medication and test results; store physician contact information; and even export a PDF report to share with their child’s health care team.