If you’ve been around this blog enough, you know that we don’t shy away from uncomfortable topics. I’ve been open about some of the struggles I’ve faced, including some of the tough moments we’ve walked through in our personal lives and with the kids. Today’s post is going to be no different.
Today we are talking about poop.
More specifically, we are going to talk about IBD – Inflammatory Bowel Disease, particularly in how it affects children. Recently, I was invited to “Whiteboards and Washrooms” Lunch and Learn event, hosted by AbbVie, where we heard from Dr. Thomas Walters, Co-Director of the Pediatric IBD Programme at SickKids Toronto, all about how IBD affects children and how he and his patients tackle treatment. We also heard from Kate Murray, founder of Robbies Rainbow where she spoke about raising a child with this chronic illness, as well as hearing from Robbie himself about living with IBD.
But first, let me open up and get a little more personal with you than I ever have.
While I don’t have IBD, I have suffered for most of my life with some form of IBS – Irritable Bowel Syndrome. I can remember where I was the very first time I ever had a flare up. I was about 10 or 11 years old and I was standing in the school parking lot after school, waiting to be picked up.
And it hit. Out of nowhere. I had no idea what was happening, but I instantly grabbed my belly and doubled over in terrible pain. I couldn’t really articulate what I was feeling, but I knew I had to drop everything in that moment and run to find a bathroom.
Little did I know that I would continue to struggle with this issue into my adulthood.
I’ve been for the tests, I tried eliminating various foods, I’ve taken the probiotics. Even with doing all of those things, an “attack” can still strike at any time, without any warning. Because of that, I’ve had to learn to always be prepared. I always carry around medication that I can take when a flare up happens that usually works for fast relief. I also am ALWAYS aware of where the bathrooms are in any new environment I enter. Recently, we travelled to Paris where you often have to pay to use the bathrooms. Because of this, I had to make sure that I always had some coins on me in case of emergency.
It’s just something I’ve had to learn how to deal with as I’ve struggled with it for more than half of my life.
It’s not a fun thing to talk about and something that I’ve been embarrassed of for many years, but I’ve found, as with most things in life, the more open and honest you are about it, the more people are educated and can offer support.
I say all of that to say that while I don’t suffer with the more chronic IBD version, I do understand a little bit about what it’s like to suffer from an ongoing and somewhat embarrassing bowel issue. Sitting at this lunch, hearing from both Dr. Walters and Robbie about those struggling with IBD was so enlightening for me to know that there are many out there who not only live with this but can learn ways to thrive with it.
Did you know that Canada has among some of the highest rates of children suffering with IBD? As of 2012, there were an estimated 5900 children with IBD who were under 18 years old in Canada.
So what exactly is IBD you might be asking? Inflammatory Bowel Disease is an umbrella term to describe disorders which cause chronic inflammation of the digestive track, such as Crohn’s disease and ulcerative colitis. Symptoms can include the more obvious things like diarrhea with or without blood present, weight loss and abdominal pain but it can also include not-so-obvious symptoms such as fevers, mouth sores, swollen joints, skin rashes and poor growth. Often times, for many children suffering with this, it can take months and many trips to the doctor to properly diagnose.
Because of all of these symptoms, IBD can be a tough disease for an adolescent to live with, both from a physical and psychological perspective. While there is no cure for the disease, doctors are most interested in helping their patients achieve remission, which can be described in three ways: feeling better (symptom control), “reading” better (lab results) and looking better (intestinal healing). Dr. Walters said that most of his patients goal is simply “I want to be normal,” so achieving remission can really help bring about a better overall quality of life.
Similarly to my own experiences with IBS, I’ve had to learn what “normal” looks like for me. I’ll be honest, the first time I go over to a new friends home for dinner, I often have to have that awkward conversation about my illness in case of an unexpected flare up. Even more so for kids struggling with IBD, living with this disease and learning to accept it as normal can be the difference between thriving or not. So it’s not surprising that there is a strong mental health component to dealing with IBD – stress and anxiety can sometimes flare up right alongside the IBD, having a negative impact of treatment.
That’s why it’s so important for kids struggling with this disease to have the proper support — their “village” — around them to build a strong network in which they can thrive. Having open communication with your child’s teachers and having a game plan with them so that your child can feel comfortable and confident at school is key. Also, keeping them active in extra-curricular activities is important, but also having an understanding with the coaches or instructors that your child may miss some days when a flare up occurs. Also coming up with some kid-appropriate ways for your child to communicate what they are struggling through with their peers in a non-embarrassing way will help build greater understanding in their social circles.
Dealing with IBD in children can be a stinky situation, but with the proper diagnosis, doctors and support system in place, a child can really thrive and develop into a strong and confident adult. With the right building blocks, control of the inflammations and planning for the future, you can rest assured that your child will have a GREAT life, IBD and all!
If you’d like more information on inflammatory bowel disease, visit SickKids Toronto or Robbies Rainbow.
Note: I received information for this post while attending a sponsored event by AbbVie Canada. As always, the thoughts and opinions are 100% my own.