I think fear and worry come with the territory as soon as you become a parent. From that first moment where you see the blue line on the stick, your imagination starts to run. Anything and everything can go wrong, and I think each of us can imagine all sorts of variations of harm to our children.
My eldest is now 12 years old, which means I have a baker’s dozen of years of worry under my belt, most of it purely housed in my imagination.
Overtime, of course, some of these worries actually become reality. When you have to rush to the hospital, the moment when your child who was RIGHT there, is nowhere to be found, and when your kid gets sick—it is our actions in these moments that help us to find our way through.
As parents we know our children. We know them better than they know themselves. We see their changes, we get ‘feelings’, and our instincts are often right.
Forrest Riesco’s mom Linda had a feeling as well, and as she watched her son go from a healthy teen who competitively raced mountain bikes, into a child who didn’t want to eat, and was out of breath after activity, she KNEW there was a problem.
Kids are great at hiding things, and rarely do they give us the whole story. Linda believes her son was experiencing symptoms for up to 6 months before they started looking for solutions. He was eventually diagnosed with Ulcerative Colitis, and that’s when the real work began.
This is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. Sounds painful, doesn’t it? There were multiple visits to many doctors, trying to find the right solutions so that her son could not only get back riding, but also find his health again. They tried a range of medications, and eventually steroids, which helped the issue, but only short term. The symptoms returned and with them suggestions of surgery.
As she sat listening to the doctors tell Forrest how they would remove two thirds of his large intestine and fit him for a colostomy bag, and she saw how her son felt this WAS the option, and the BEST option to get him healthy, she started to worry again. He was in so much pain he was willing to accept surgery as the best option, but Linda wasn’t.
How would her active 15-year-old chase his mountain biking goals after this surgery? How could his body get the nutrition it needed to be a top-performing athlete.
So Linda did what every mother would do, she started asking more questions, and she didn’t stop until she got an answer she could work with; her son was started on a biologic medicine.
Crohn’s disease and ulcerative colitis (the two main forms of Inflammatory Bowel Disease or IBD) aren’t uncommon issues, especially in Canada. Since 1995 the number of new paediatric cases has almost doubled in our country. There are more kids who are living, and thriving, with IBD every day. World IBD Day is marked on May 19 each year, as patient organizations representing 36 countries on four continents bring awareness to this disease, which has no cure, no known cause, and very little public understanding.
As mothers we know what is best for our kids, especially when they are suffering. We know how to ask the questions, and find answers that will work for our families. We use our hope, and our instincts to find the best options for our kids, and that’s what gets us through.
If you think your child may be showing signs of IBD, including fatigue, cramps, pain and diarrhea, speak to your child’s paediatric gastroenterologist and find out what the options are to ensure your child lives a full and active life with their disease.
Chronic illness doesn’t have to change your child’s dreams, especially if you know all the options.
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. You can find 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.
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.
This post was written by Julie Nowell and is sponsored but the opinions are our own.