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Whiteboards and Washrooms: Managing Chronic Conditions

October 20, 2017 By Lena

“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.

Filed Under: Family Tagged With: #ibdkids, crohns disease, robbie's rainbow, sick kids

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Reader Interactions

Comments

  1. Josie Tusa

    October 20, 2017 at 10:58 pm

    This is such an informative post as I, too, suffer from IBS. Thank you for sharing.

  2. Stephanie LaPlante

    October 21, 2017 at 7:59 am

    I have digestive problems myself and oh do I ever sympathize. It’s very painful.

  3. Athena

    October 21, 2017 at 8:55 am

    Great informative post. Thank you.

  4. kathy downey

    October 21, 2017 at 1:09 pm

    What a wonderful post with so much information,thanks for sharing!

  5. Judy Cowan

    October 21, 2017 at 1:44 pm

    Great post and definitely an important topic. I have dealt with IBS for years now and it is not fun but manageable…mind you I always worry about the “what if” scenarios too when it comes to it. I just wish I could find a happy medium when it comes to diet and dealing with it. I can only imagine how hard to would be to deal with IBD at a young age.

  6. Lushka Smith

    October 21, 2017 at 8:50 pm

    Aw, a tough thing to go through for anyone but especially a child. Hope your son finds his normal.

  7. Soozle

    October 22, 2017 at 6:36 am

    I think nothing is worse as a child than not feeling ‘normal’. I think it’s very important to normalize medical conditions or at least strive to make life as normal as possible… and I totally understand the worry!

  8. Lynda Cook

    October 22, 2017 at 6:25 pm

    It’s got to be tough on him and I can feel his pain with the cramps, they are not nice at all..hope everything goes all well for your son

  9. Peter Tusa

    October 22, 2017 at 9:12 pm

    This is a very informative post. Thank you! I hope that all goes well with your son.

  10. Julie

    October 23, 2017 at 9:33 am

    Thanks for the info, I wasn’t really aware that IBD effects children. Hoping it works out well for your son.

  11. kristen visser

    October 23, 2017 at 12:31 pm

    oh wow!! I had no idea it could get that bad. poor little man having to go through that. I do not know anyone with IBD but it is definitely a good thing to know about

  12. Janet M

    October 23, 2017 at 7:01 pm

    I am glad you went to lecture and thank you for the info.

  13. lori galbraith

    October 23, 2017 at 9:25 pm

    Great information. It is challenging dealing with IBD.

  14. Elizabeth Matthiesen

    October 23, 2017 at 10:51 pm

    Sorry to hear about your son and hope that he’s able to cope, it definitely isn’t easy for a child nor for his parents. This was a very informative post, thanks so much for sharing.

  15. toni v.

    October 24, 2017 at 7:31 am

    very good info in this article.

  16. Carole D

    October 24, 2017 at 6:17 pm

    I know a little girl that had diarrhea at least once a week it took 2 years to diagnose her, she has krone disease.

  17. Guppy

    October 25, 2017 at 4:36 pm

    I was diagnosed with an autoimmune disease 30 years ago so I live with ‘managing’ and flares all the time. My husband has had digestion issues forever (I’ve known him 18 years..) but he’s reluctant to get a diagnosis. I wonder if he fears submitting to the fact of needing ‘treatment’ – easier to deny??
    It’s so sad hearing more frequently of younger people like your son having to deal with these health issues but so great that there are more and more resources available!

  18. Susan T.

    October 27, 2017 at 4:31 pm

    IBD is such a tough disease, especially for a kid. I hope you can work out a diet change that lets him live normally and not be in pain!

  19. sarah sar

    October 28, 2017 at 11:38 am

    Very informative post. I have friends and family members with IBD and it’s often a misunderstood condition.

  20. LisaM

    October 28, 2017 at 7:55 pm

    Oh gosh – the fact that we, as humans, function at all never ceases to amaze me.

  21. Chelsea m

    October 29, 2017 at 9:46 am

    This is so informative. Thanks for sharing!!!

  22. Amanda

    October 29, 2017 at 11:01 am

    My son has ulcerative colitis and coming across your blog almost made me cry. Thank you for openly talking about it and providing the information from the lunch. It’s nice to know that people with your following use their influence for helping others.

  23. Darlene Schuller

    October 30, 2017 at 8:44 am

    Bowel problems run in my family. Aunts with Chrohn’s and Mom with collititis.. Chronic illnesses like this are so hard :( hard to predict and difficult to know from one day to the next how it’s going to be.

  24. Sandra Tang

    November 26, 2017 at 12:36 pm

    Great post!

  25. Peter Tusa

    January 2, 2018 at 11:14 pm

    Lots of great information here! Thank you for posting and I wish all the best for your little guy!

  26. Calvin

    January 5, 2018 at 2:44 pm

    Really sorry to hear about the condition. Thankfully I have no digestive issues. Hope things improve in life later for him

  27. Fan R.

    February 14, 2018 at 9:24 pm

    It is not easy to deal with digestive conditions, especially for children. Combined efforts of doctors, parents, teachers, friends and family help a lot.

  28. Jay M

    November 23, 2018 at 12:45 pm

    Digestive issues are no fun. My husband has had digestive issues for a while now, and like another reader’s husband, he seems to want to just suffer through it. I hope your son is feeling better these days :) You are smart to be researching these things so diligently!

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Lena Almeida

Toronto Blogger, Social Media Strategist for Listen to Lena Inc. Television & Radio Personality, Columnist and Speaker. Family Travel Expert. Star Wars Fanatic. Perfecting the Art of Conversuasion. Read More…

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