Whiteboards and Washrooms: Managing Chronic Conditions

“Don’t worry mom, I had good job,” my seven-year old says as he exits the washroom.
“Does your tummy hurt?” I ask, still hovering.
“NO!” he screams, clearly irritated with me. “Stop asking!”

I may be slightly obsessed with my son’s bowel movements. He’s had Irritable Bowel Syndrome (IBS) since birth, with at least one episode of diarrhea per week for as long as I can remember. He often complains of a tummy ache, clutching his stomach as he grimaces in pain. We’ve worked on the (unconfirmed) theory that he may be allergic to dairy or sensitive to acidic foods (he seems to be in his worst shape on Wednesday nights – coincidentally, Wednesday is Pizza Day at school). But since he’s a happy, well-adjusted boy with boundless energy and a devil-may-care attitude, we try not to visibly panic; we’ll adjust his diet when symptoms arise and keep notes on the foods that tend to trigger discomfort.

Inside, I’m panicking.

My dad has ulcerative colitis, an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in the digestive tract. I have rheumatoid arthritis, an autoimmune disease in which the body’s immune system mistakenly attacks the joints. Genetically, the odds are not in his favour.

So it’s fair to say that with every episode of loose stools, tummy pain or general malaise, my mind goes there; I begin to fear that my little one has started down a path where immune-mediated phenomena are in his future. I know that inflammatory bowel disease has a genetic component; I also know that it’s difficult to pinpoint what triggers the onset of the disease. But I’m comforted by the fact that even though there’s a small chance he may inherit the disease, there’s an even greater chance he’ll be just fine.

Still, I worry.

Last month, when I was invited to a “Whiteboards and Washrooms” Lunch & Learn Event, I knew it would be incredibly beneficial for me to attend. The luncheon was specifically created for media and parent influencers, providing insights on how to support children, parents and families affected by juvenile IBD.

At the event, we heard from:

Dr. Thomas Walters, a gastroenterologist at SickKids Hospital, and the co-director of the SickKids’s Paediatric Inflammatory Bowel Diseases program. Dr. Walters shed light on when to see a physician, what to ask, how to approach new treatments, and how to talk to your child about chronic conditions.

Kate Murray, founder of Robbie’s Rainbow, spoke about her experience raising a child with the chronic condition IBD, the challenges she has faced and how she and her son Robbie have overcome them.

I was riveted.

Hearing Dr. Walters speak about inflammatory bowel disease in a clear, easy-to-understand way helped me to understand both the symptoms of IBD and the urgent need for remission. Remission can be defined as:

1. Feeling better – greater symptom control
2. Reading better – lab results are back within normal or “normal for you” limits
3. Looking better – endoscopic mucosal healing, mucosal healing and transmural healing
Targeting remission is important because it improves the overall quality of the patient’s life, reduces time away from school and activities, and avoids surgery and hospitalization. However, when Dr. Walters asks his patients what their target is, the answer?

“I want to be normal.”

No one understands this better than I do. When I had my first rheumatoid arthritis flare back in 2014, I can vividly recall lying in the hospital bed, trying to piece together what was happening. When the rheumatologist on call came to visit, the very first question I blurted out was, “Will I be normal again?”

She looked me dead in the eye and answered, “You may have to find a new definition of what normal means to you.”

For children living with IBD, a “normal life” may include challenges. That’s why Dr. Walters encourages his patients to talk about their disease by developing a short and sweet explanation for friends, teachers and coaches:

I have a sore tummy. The Doctors are helping me.
I take special food in the tube to help my tummy.
I have IBD. It makes my stomach sore. I take medicine to make it better.
I can’t do everything want to at present.

To offer even greater perspective, we were joined by Kate Murray and her son Robbie of Robbie’s Rainbow.

Robbie’s Rainbow supports families who have a child aged 0-18 years of age living with Inflammatory Bowel Disease (IBD) and need access to critical treatments, procedures and care.

Today there are an estimated 6,000 children and teens in Canada living with IBD who rely on some form of drug treatment to stay in remission. Many of these children and their families are able to manage the cost of treatments through private health insurance, compassionate funding or special programs, but some are not so fortunate and are in a ‘crisis situation’.

Robbie’s Rainbow ensures that any child in need, receive access to a treatment, procedure or care deemed crucial by their healthcare provider.
Robbie was diagnosed with Crohn’s disease at 6 years old (he’s now a teenager). Thus, he was able to share first-hand insight on what it’s like for a child living with IBD – and how it affects them socially and emotionally. I commend him for both his bravery in sharing his story and his determination to ensure all kids have access to the care they need to fight the disease.

As for his mom, Kate? Let’s just say that this mama can relate on so many levels. As soon as the presentation concluded, I rushed to confide in her that I ask my son about his bowel movements on a daily basis. We had a good laugh about it, because really, what else is there to do?

I’d like to thank Dr. Walters, Kate and Robbie for sharing their knowledge, and AbbVie for sponsoring the Whiteboards and Washrooms Lunch and Learn. Will I still worry about my little one? Probably. But I’m confident that whatever the future holds, we’ll take it on together.

Click here for more information on inflammatory bowel disease in kids.

I received information for this post while attending an event hosted by AbbVie Canada, but as always, opinions are my own.