Ryan Perks is taller than his mom, and family photos show him as a healthy, active 13-year-old.
Those simple facts are, for Naomi Perks, cause for enormous rejoicing.
It’s been a long journey to get Ryan to this place after years of gastrointestinal issues, exhaustion and the stress of not knowing the root cause of any of it.
Now, one year after receiving an official diagnosis of Crohn’s disease, the Perks family is setting out to walk and raise awareness for Crohn’s and Colitis Canada.
Normally, the organization would hold its fundraising Gutsy Walk in person at Trout Lake. This year, thanks to the COVID-19 pandemic, the 25th anniversary event has gone virtual. For Naomi and Ryan, that means gathering family members and a few friends and setting out for their own socially distanced event in New Westminster this Sunday (Aug. 23).
They had originally intended to walk the length of Front Street, which is now closed to traffic on summer Sundays – but, given the current heat and sun, they’re thinking of switching their location to the shadier trails of Queen’s Park.
Either way, they’re using the event to help raise awareness of the disease that has impacted their family for years – and, hopefully, to raise some money for the organization that’s been leading the charge for Canadian research and support for the 270,000 Canadians who live with the chronic illnesses.
Although 1 in 140 Canadians suffer from those diseases, there isn’t yet a known cause.
Naomi notes that, even as far back as babyhood, Ryan often suffered gastrointestinal issues; whether those were related to Crohn’s, she doesn’t know. But it got worse as he grew.
“Ryan suffered for quite a long time with what we thought were regular kid GI issues,” Naomi says.
By Grade 4, it was starting to affect his schooling; in Grade 5 and 6, he got to the point of missing a significant amount of school.
The family went through what felt like a never-ending series of doctor’s visits in an attempt to track down the root cause.
“At one point the doctors thought it was IBS (irritable bowel syndrome). One doctor was really sure it was anxiety-related, or it was a gluten intolerance. We’ve been tested for celiac. And whether it was a lactose intolerance and allergy – we’ve been tested for that,” Naomi says.
Ryan spent many weeks going through a full elimination diet, slowly reintroducing foods one by one to see which one might be causing the problem.
“It’s been a bit frightening at some points, and really frustrating,” Ryan says. “Before we discovered that I had Crohn’s, we were doing all sorts of diets. There was one point where I would just basically have salads and fake meat, mainly. I would have to read the package on everything I was eating. It was frustrating.”
Even more frustrating? None of it worked.
“We went through all of that, and at the end of the day, nothing made me feel any better,” Ryan says.
Finally, after a series of tests – colonoscopy, endoscopy, and a non-invasive procedure known as a fecal calprotectin test – Ryan received the official diagnosis of moderate to severe Crohn’s disease.
It still wasn’t all smooth sailing, though. At the beginning of Grade 7, after his diagnosis, he ended up with a severe flare-up that caused him to miss 45 days of school between September and December 2019.
The family started a series of treatments, beginning with less invasive options – including what’s known as EEN (exclusive enteral nutrition), or, essentially, a no-solid-foods, protein-drink-only diet. A long eight weeks of protein drinks, water and the occasional popsicle or bowl of soup broth didn’t prove to be effective.
“They helped a bit, but not enough,” Ryan says.
That was followed by a couple of attempts at some of the more mild forms of medication – Pentasa, then Methotrexate.
“That really wipes people out,” Naomi notes. “You take it, and often the next day, it’s a complete write-off. Ryan did that – and it still didn’t work.”
After jumping through what Naomi describes as some “serious hoops,” the family was able to get Ryan onto a new medication, Humira.
“They’re really strong drugs, and they have some really scary side effects,” she notes.
“You look at the page and the beginning title is a warning: heart failure,” Ryan chimes in.
Ryan has been actively involved in the family’s research about possible treatments, and he was the one who made the call in favour of Humira – which needs to be taken often but can be taken at home. It was either that or Remicade, which would have required infusions at the hospital.
“We decided the Humira would have less of an impact on my life,” he says.
And it’s so far, so good.
“It’s helped me to be able to go back to school. I rarely if ever have Crohn’s pains. I’m a lot less tired – besides being a teenager,” he says with a laugh. “I’ve also been able to do a lot more after-school activities. Beforehand, I would basically go to school, but I would have stomach cramps, and I would be extremely exhausted. I would walk home and basically collapse on the couch.”
Now – or, at least, before COVID-19 brought normal life to a temporary halt – he’s into track-and-field and rugby.
And he’s growing, as teenagers are wont to do.
“He’s taller than his short little mom,” Naomi says with a laugh.
And they can both see the difference when they look at pictures of the “before” Ryan and compare them to the “after.”
“You look at the old pictures, and he looks gaunt,” Naomi says. “Now, he looks a lot healthier.”
There are still some extra worries, particularly around the fact that, because Crohn’s is an autoimmune disease, medications to treat it suppress the immune system. That means that Ryan has been more susceptible to colds and flus going around school. In the midst of a viral pandemic, that has obviously elevated the family’s level of concern around COVID-19.
But, Naomi notes, Crohn’s and Colitis Canada has been leading the way on information regarding COVID-19 and its effects on the population with inflammatory bowel diseases. Thankfully, at this point, they don’t seem to be more at risk than anyone else.
That’s good news for Ryan, who can’t wait to start his Grade 8 year at Glenbrook Middle School this fall.
“I need more stuff to do,” he says.
The family will continue taking all COVID-19 precautions, Naomi says.
And, this weekend, they’re hoping they can rally some support from the community so that Crohn’s and Colitis Canada can continue its work to find better treatments – and even, one day, a cure.
To donate to the Perks’ family’s efforts, you can find a link online at https://crohnsandcolitiscanada.akaraisin.com/ui/GutsyWalk2020/team/277516.
To find out more about Crohn’s and the Gutsy Walk, check out www.gutsywalk.ca.
