Storytelling – raising awareness of IBD

Hi Everyone,

I am veering slightly off path for this post to honour and raise awareness for Crohns and Colitis Awareness Week (Dec 1 -7th). My husband Blair suffers from Crohns Disease (CD), a chronic inflammatory bowel disease (IBD) of the GI tract. It causes all sorts of symptoms, but is primarily associated with GI issues (using the bathroom A LOT) and the accompanying symptoms of weight loss, fatigue and malnutrition, to name a few. For this post, I want to contribute to the IBD community by telling my husbands story in hopes that this invisible and debilitating disease can be better understood.

In the summer of 2014, 4 months before the birth of our first child, I stumbled upon Blair writhing in pain in our spare bedroom. It was one of those moments that you can remember like it was yesterday. As a man, Blair is known for fighting through pain and sickness (a symptom of being conditioned as a stoic boy in our society), so the state he was in was really worrisome. I rushed him to the hospital, suspecting appendicitis.

When tests came back negative, we started into the very frustrating process of a CD diagnosis; more testing and more waiting. In that period of waiting, Blair lost 30 pounds. Eventually, after a couple of months, he came home upset and told me the news; again, another moment I feel I could live in right now. I was sitting on our small beige couch in our Toronto home and Blair was sitting across from me in his work clothes. I really had no idea what we were talking about – what was Crohn’s Disease? It sounded bad, and it was.

At this time, Blair worked a finance job in downtown Toronto and commuted to work during these first few hard years of learning to manage his IBD. This is when we really realized the invisibility of the disease; Blair would often ride the subway home at night, hunched over in pain in the crowded group, and no one would think to offer him a seat; how would they know?! It’s invisible. When I was pregnant, someone always offered me their seat on the subway, and I didn’t really need it.

Over the next two years, Blair would go on and off many different drugs to try to manage his symptoms. The worst of the bunch for him was prednisone, which caused his face to swell up, his moods to yo-yo and his head to ache; and it really didn’t help his CD much in the end. As all of this was happening, Blair became a father. After the birth of our second child 2 years later, he was experiencing a flare up and had to leave the hospital room and sleep in the car as he was feeling so terrible. I didn’t mind, because I knew how bad it must have been to have to sleep in a car after the birth of your child. This was definitely a low point.

Thankfully, Blair’s employer at the time was one of those hard to come by sensitive Bay Street men, plus, his brother had CD. I remember Blair coming home saying his boss gave him a bear hug on a day when he wasn’t doing that well and shed a little tear for him. He also told him to go home and stay there as long as he needed. This display of male camaraderie and open emotion was special on multiple levels. I don’t think Blair’s boss would have had the same level of empathy or understanding had his own brother not suffered from the condition. This is why raising awareness is so important; this interaction could have been much different.

Unfortunately, not every employer has recognized Blair’s struggles with IBD, and it has contributed to some pretty stressful times for us as he has tried to navigate managing his CD and working a professional job. At our stage of life as young professionals, this is one of the most important reasons for raising awareness about IBD; to help employers understand how debilitating this condition can be. Trust me when I say, Blair wishes he could be productive at work every day during a flare up but it is humanly impossible at times, if only because he needs to spend most of the day in the bathroom. During the first week of school this year, Blair landed in the hospital because he lost so much fluid during a flare up and needed intravenous nutrition. Work wasn’t even something he could think about in these few days it lasted.

When our youngest child turned 1, we decided to leave the city and move to the Kawartha Lakes, where I am from. We would have the help of my mother, and live in the country, free from commuting on public transit and the hustle of Toronto living. Blair’s CD was not the primary driver of us choosing this different way of living, but it was definitely a factor in our decision-making process.

These past couple of years have been better for us. Blair has started taking an intravenous drug every 6 weeks that does a pretty good job of controlling his CD symptoms. The only issue is that it lowers his immunity considerably, so he can’t venture out too far in a global pandemic. Work-from-home options are actually really beneficial for people with IBD , though, and I hope those who have the good fortune to WFH get this option when the pandemic abates.

The silver lining of IBD might be the resilience and gratitude that comes with good health. When Blair is feeling really well, we are all grateful. Even our small children recognize when daddy is feeling good. CD adds layers to Blair’s identity and helps him to feel empathy for others on a level that many can’t understand. I will never pretend to understand what someone with IBD goes through, but I too have developed a new level of empathy for those living with chronic diseases. Please check in on someone you know with IBD; most of the time, they just need someone to listen.

Happy holidays and good health to all,

L.

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