The Power of Love: When your child has Crohn’s or colitis
Jessica was holding her daughter Samantha in her arms when she heard the doctor give the diagnosis of ulcerative colitis. ‘Sam-Sam’ was just 21 months old, but Jessica and her husband Jason had known from the beginning that there was something different about their beautiful child. Just 4lbs, 3oz when she was born, she didn’t seem to really smile or laugh very much… yet was always so sweet.
Listening to the doctor’s diagnosis that fall day in 2013, Jessica knew that Sam-Sam had probably been dealing with pain and discomfort even as a newborn.
“That was a really hard day for our family,” says Jessica. “On one hand, we were happy to finally have answers, but on the other, we were so sad she was going to have to live with this lifelong disease. We wanted to just kiss and hug her and make it go away. We wanted to make it stop.”
The symptoms had started with traces of blood in Sam-Sam’s stool when she was 15 months old. On one occasion, it was so bad that Jessica and Jason rushed her to the children’s hospital. Even with a family history of ulcerative colitis (Jason and his dad have colitis), no one thought this disease could affect a young toddler. Doctors originally thought it was a food allergy, and so Jessica changed her daughter’s diet.
“Sam-Sam was fine for three months but the blood soon started again,” says Jessica. “At this point it was clear she needed a colonoscopy; she was only 21 months old.”
The colonoscopy showed that two-thirds of her large intestine was inflamed and ulcerated. Sam-Sam had been dealing with a serious health condition that caused internal bleeding, often intense pain, fatigue, and the malabsorption of nutrients needed by her growing body.
Jason says, “As parents we want to protect our child from everything. The fact that there’s no cure yet is heartbreaking. At only 3 years old, it is that much harder because she can’t tell us where it hurts or how much.”
Ulcerative colitis and Crohn’s disease are the two main forms of inflammatory bowel disease (IBD). They are lifelong conditions that cause inflammation and ulceration in the digestive tract (or gastrointestinal (GI) tract). In Canada, there are nearly 250,000 people with Crohn’s or colitis. It is estimated that approximately 6,000 are children under 10 years old. Since 1995, Crohn’s and colitis rates in Canadian children have almost doubled, making them the fastest growing IBD demographic in the world. Symptoms of IBD can be debilitating, affecting school attendance and success, career choices and relationships.
There are many challenges and concerns for parents of young children living with IBD. Since Crohn’s and colitis inflame the lining of the GI tract, digesting food, absorbing nutrients and eliminating waste can be challenging. This can adversely affect a young child’s growth and development, though many catch up during puberty. To help support the nutritional needs of some children and to treat the inflammation seen in Crohn’s disease, Crohn’s and Colitis Canada is encouraging provincial governments to improve access to Exclusive Enteral Nutrition (EEN). See related article here.
Another concern for people with IBD, or for the parents of young children, is the (slightly) increased chance of developing colorectal cancer.
“Our greatest worry for Sam is the increased risk for cancer,” says Jessica. “There is also the concern about the effects of long-term drug use [such as steroid or immunosuppressive therapies]. We wonder if it will affect her ability to have her own children some day. I know it’s a long way off but it’s natural for parents to think about their children’s future.”
Jennifer, the mother of Harley and Mackenzie, also worries about her children’s future with IBD. Harley, 15, and Mackenzie, 16, were both diagnosed with Crohn’s disease when they were 10 years old.
“While I feel lucky that my children have not needed surgery or been hospitalized, I know that can change,” says Jennifer. “I worry about the long-term effects of the medications. I also worry that Harley will not have enough energy to play the sports he loves or that Mackenzie may have difficulty keeping her stress levels down when she heads off to university.”
Jennifer adds, “However, through it all, what I’ve learned about myself and my kids is that you are stronger than you think.”
Right now, one of Jennifer’s biggest challenges is finding the right foods for her two children. Most people familiar with IBD know that no two cases are the same – having two children with Crohn’s disease doubles the challenges for Jennifer.
Mackenzie and Harley
“What one child tolerates the other one doesn’t,” she says. “I’m also challenged with finding the right medications to control their symptoms and fitting doctor appointments into their schedules while trying to avoid missing too much school. It’s all very time consuming and constant. But you just do it. You make it work. There is no other choice because this disease is not going away.”
Jennifer and her family have taken advantage of the support offered to them through Crohn’s and Colitis Canada.“Both my children participated in Camp Got2Go and they loved it,” says Jennifer. “It was so beneficial for them to talk to other kids their own age [with IBD] and to see what others have gone through.”
Watch the 2014 Camp Got2Go video, featuring Harley and Mackenzie.
Due to a reputation as ‘bathroom diseases’, many people with Crohn’s and colitis – especially kids – can be hesitant to talk about their symptoms with their friends and classmates. Camp Got2Go helps lift the isolation many feel, both during the 6-day, overnight camp and afterwards. (For more about Camp Got2Go, click hereto learn about Bryce’s experiences at Camp Got2Go or visit campgot2go.ca
Gutsy Walk participation fuels hope
To keep fuelling important patient programs (like Camp Got2Go), advocacy, awareness and (especially) research, Crohn’s and Colitis Canada raises funds through events like Gutsy Walk. Now in its 20th year, Gutsy Walk happens in 60 communities across Canada on Sunday, June 7th. While the $3.3 million to be raised this year is vitally important, the 16,000+ participants will celebrate a shared purpose, connecting with others in their area who are living with Crohn’s and colitis – and their many supporters and champions.
It was at Gutsy Walk that Jessica learned about Crohn’s and Colitis Canada. She finds being involved in the event a great way to do something positive for her Sam-Sam and for all people living with IBD. “Sam is strong, resilient, and a sweetheart. In one word she’s awesome!” says Jessica. “We walk for her and to help find a cure!”
Sam-Sam is also this year’s Gutsy Walk National Honorary Chair – she’ll be at the Gutsy Walk with her mom and dad and family to show they’ve ‘got the guts to make it stop’. Every dollar raised will count towards Crohn’s and Colitis Canada’s most ambitious campaign yet; the Crohn’s & Colitis – Make it stop. For life. fundraising campaign will raise $100 million by 2020 to transform lives by accelerating research, patient programs and advocacy.
Jennifer’s family are also big participants in Gutsy Walk: “As a family we have participated in the Gutsy Walk for the past four years and will be doing it again this year,” said Jennifer. “We also raise money for the walk through a bottle drive and my husband has a poker night with his friends.”
You can join Sam-Sam, Harley and Mackenzie at the Gutsy Walk! Just register today for the event on June 7th!
Or, if you can’t attend Gutsy Walk, you can sponsor Sam-Sam’s team here and Jennifer’s family team here.
You can also sponsor the local honorary chairs of the Gutsy Walk in your community: visit here.
Crohn’s and colitis are truly life-altering diseases. Yet the sheer gutsiness of their children – their bravery and their perseverance – inspire Jessica and Jennifer with strength to successfully face the challenges before their families.
As Jessica says, “It’s all about the power of love. You will do anything for your child.”
Jessica & Jennifer’s Insights
Jessica’s advice for other parents of young children with IBD is to:
- Educate yourself as much as possible about the disease and the available treatments.
- Advocate for your child: don’t be afraid to ask questions and talk to as many people as you can.
- Know that there will be good days and bad days and learn to ride the emotional rollercoaster.
- Give your child lots of love and, as much as possible, treat them like a regular kid.
Jennifer’s advice is similar:
- Learn as much as you can but take other people’s advice with a grain of salt.
- Everyone with this disease has a different experience and what works for one person may not work for your own child.
- Find a balance between having the disease out in the open, i.e. talking about it comfortably, and trying not to make the condition your whole life.
Crohn’s and Colitis Canada offers a variety of education brochures , online and in print, including:
New: A Teacher’s Guide (electronic only)
Updating this year: Biologic Treatments (see current booklet here)
Check out the next issue of Talk About Guts e-newsletter in June, when we will focus on research and treatments, as well as developing a positive working relationship with your healthcare team