Flying in the face of a chronic disease and searching to improve the lives of Canadians suffering from IBD
Andrew Mac Isaac, pictured above, was diagnosed with Crohn’s as a young child. He refuses to allow the disease to define who he is or what he can achieve in his life. He is committed to helping others battling IBD to “celebrate each other and raise hope and awareness” about the chronic conditions of Crohn’s disease and ulcerative colitis. Supplied
When he was only eight years old, Andrew Mac Isaac was living in what he can only describe now, at the age of 26, as “hell.”
Severe stomach cramps, which meant a constant run to the washroom, 10 plus times a day, either to throw-up or because of diarrhea, left him in the fetal position on the floor.
“I couldn’t eat. I was very lethargic, pale and small for my age.”
While his distraught family sought a way to end his suffering, his doctor “was out of answers,” says Mac Isaac. He saw a psychiatrist, therapists and dietitians. Finally, at the age of nine, he was referred to a pediatrician who was able to diagnose Crohn’s disease, one of the autoimmune diseases, along with ulcerative colitis and indeterminate colitis, known as inflammatory bowel disease (IBD).
“There are times when you’re tied to your bed or your couch and you’re literally and figuratively alone. But the idea is that Crohn’s and Colitis Canada is here for you, as an organization, as a community. We’re here for you, with information and a community of support, to pick you up when you’re down. ”
IBD causes the body to attack itself, leading to inflammation of all or part of the gastrointestinal tract. The chronic diseases, for which there is no cure, disrupt the body’s ability to digest food, absorb nutrition and eliminate waste in a healthy manner. Approximately 300,000 Canadians endure the devastating symptoms of the malady, the causes of which are largely unknown.
While Mac Isaac and his family were relieved that a conclusive diagnosis had been found to explain his crippling sickness, it would be a while before his agony and pain were under control.
Finding the right treatment to heal his body took many failed attempts, he says. “It wasn’t a quick fix.” He was initially prescribed oral steroids, which his body, in its weakened state, rejected. He was put on intravenous medication and at some points was swallowing up to nine pills daily.
He was 12 when he started feeling like he had his life back. As he wrote in a short article about his journey, after years of dealing with his debilitating illness, he was able to return to being the “funny kid who was smart, could play the odd sport and keep a smile not only on my face, but everyone else’s … I was finally ready to be me again.”
Unfortunately, the disease, which is thought to be caused by a combination of genetic, microbiotic and environmental factors, continued to take a toll on Mac Isaac’s body.
His high school years were the worst, he says. In Grade 9, he had to go on a feeding tube for three months; he had a temporary ostomy inserted; he lost 30 pounds in one month and was so exhausted he had to fight to stay awake in class. He had been looking forward to meeting new people, going to parties, “everything a teenager dreamed of.”
Instead, “I had a tube in my nose; I had braces; I was skinny because my body wasn’t getting nutrition.
“As much as I tried to embrace it and make jokes, there were times when that just simply wasn’t enough. The reality was, at the end of the day, I had to go home and attach myself to an IV pole to get my nutrients. No one should have to do that. But a 14-year-old trying to live a normal life, that added a whole extra level of not fitting in.”
Mac Isaac found strength thanks to his “phenomenal family,” his “incredible friends” and the “power of sport,” which he pursued despite infinite challenges. “I played hockey with a tube in my nose; we actually won the championship that year.
“I’m on the ice for an hour and that’s all that matters. It’s just me being able to shoot the puck in the other team’s net. That’s how I got through it. That was my release.”
After four years, doctors determined he was strong enough to undergo reversal surgery. Since then, he’s had another surgery, he continues to grapple with flare ups, follows a restricted diet and relies on infusion medication to manage Crohn’s. While he says the disease is not in remission, he describes his condition as stable.
“As an adult, the hardest part is that this disease is up and down and so unpredictable.” While diagnoses of IBD are higher for those under 30 years of age, it can hit at any age, including seniors. The number of people living with IBD is rising and, according to Crohn’s and Colitis Canada, it is expected that by 2030, one in 100 Canadians will be impacted.
Today, following university studies where he’s earned both undergraduate and post-graduate degrees, Mac Isaac has taken on the role of digital engagement coordinator for Crohn’s and Colitis Canada. The national volunteer-based charity helps fund research focused on advancing treatments and finding cures for Crohn’s disease and ulcerative colitis and offers programs to people affected by the diseases.
Mac Isaac says he loves the job because though he’s always tried to support others who are afflicted by IBD, “it’s given me a voice to help others on a grander scale.”
He’s started a TikTok account for people with IBD, has helped facilitate and participated in the organization’s annual Gutsy Walk fundraiser, and is involved in the delivery of many of the organization’s programs.
“I can’t begin to express how thankful I am to meet so many inspirational people and to hear their perspectives.” While it’s unfortunate that there are so many people living with Crohn’s and colitis, it’s important they know that they don’t have to face their disease alone, he says.
Crohn’s and Colitis Canada has launched an awareness campaign – You’re Not Alone – running throughout November aimed at reaching people who are facing the emotional and physical impacts of living with IBD.
“This disease is very isolating,” points out Mac Isaac. “There are times when you’re tied to your bed or your couch and you’re literally and figuratively alone. But the idea is that Crohn’s and Colitis Canada is here for you, as an organization, as a community. We’re here for you, with information and a community of support, to pick you up when you’re down.”
The young man, who still plays hockey and is an avid golfer, says he looks to a future where a cure has been found for IBD. He’s confident that with continued research, more treatment options will be available.
“Hopefully we’ll find a way to eradicate the inflammation in the digestive tract to eliminate both Crohn’s and colitis,” says Mac Isaac.
In the meantime, he would tell those new to dealing with symptoms of the diseases to try to be patient, that there is another side to what might initially feel like a nightmare.
“You’re going to push through and you’re going to meet a great group of people. You’re going to grow to be stronger than you could ever have imagined. You’re going to be okay.”
Mac Isaac invites others to share his motto: “I have Crohn’s disease; Crohn’s disease does not have me.
“And I’ll live by those words until I no longer have to,” he adds.
About Crohn’s and Colitis Canada
Living with inflammatory bowel disease (IBD) means living a life full of disruptions. That’s the case for more than 300,000 Canadians already, and someone new is diagnosed with Crohn’s disease or ulcerative colitis every hour.
Crohn’s and Colitis Canada aims to find the cures for Crohn’s disease and ulcerative colitis and to improve the lives of everyone affected by these chronic diseases. The organization provides programs, advocacy and awareness activities across Canada to people living with these diseases, their families, health-care professionals and the general public.
Crohn’s and Colitis Canada is committed to:
Accelerating the impact of research
Broadening the reach of programs to impact more people with IBD and their caregivers
Boosting awareness and understanding of IBD
Driving system change through advocacy and partnerships
Crohn’s and Colitis Canada is at the core of IBD research in Canada and is a powerhouse on the world stage. The organization is one of the top two health charity funders of Crohn’s and colitis research in the world and the largest non-governmental funder in Canada. Since 1974, Crohn’s and Colitis Canada has invested over $140-million in research leading to breakthroughs in genetics, gut microbes, inflammation and cell repair as well as laying the groundwork for new and better treatments.
For more information, visit crohnsandcolitis.ca
To view this report on The Globe's website, visit globeandmail.com
To view the full report as it appeared in The Globe's print edition: Crohn’s and Colitis Awareness Month