Gut-wrenching diagnosis
Group works to address emotional trauma of Crohn’s and colitis
Crohn’s disease means Victoria student Lacy Brandt has dealt with regular attacks of gutwrenching cramps and multiple, daily bouts of diarrhea since her early teens.
Once a keen dancer, 24-year-old Brandt gave up on hip-hop team dancing. She graduated from the University of Calgary, but there were times she could barely make class. Fatigue, stress, worry all seemed to bring on an attack, usually at least once a year, lasting weeks, even months.
“I would just stay home in a fetal position,” she said. “I just did my best to deal with the pain.”
It wasn’t until just over two years ago that she even received a doctor’s diagnosis. She was in the middle of a trip to Australia when she suffered a bad attack. She flew home, went straight into hospital and the problem was identified. Prior doctors were either stumped or didn’t believe her.
Now in the second year of studying acupuncture and traditional Chinese medicine at Pacific Rim College in Victoria, Brandt can relax a little over paying some of her fees. She is the recent recipient of a $5,000 scholarship for Crohn’s or colitis patients from pharmaceutical company AbbVie.
Brandt was selected for the scholarship by Crohn’s and Colitis Canada, a national organization advocating, organizing and educating on behalf of people who deal with the disease.
According to the organization’s website, Crohn’s disease and the closely related colitis (restricted to the large intestine) are chronic conditions, the result of inflammation of the gastro-intestinal tract. Symptoms are varied but typically marked by painful cramping, diarrhea, fatigue and in some cases fever and weight loss.
The cause is unknown and no sure cure has been identified.
Onset is typically in the period from teen years to early 30s. But symptoms can vary widely, so diagnosis can be difficult.
An estimated one Canadian out of 150 is dealing with the disease.
Victoria’s Teri McGeachie, B.C. Yukon development co-ordinator for Crohn’s and Colitis Canada, said her son contracted the disease at 15 and it transformed him from an active, on-the-go kid to a near invalid.
“If you wanted to find my son, you would be better to look to the ceiling because he never remained on the floor,” said McGeachie. “He always had a ball in his hand, always high-energy.”
“But when he was in Grade 12, he was playing hockey for the Panthers and he literally disintegrated before my eyes,” she said. “He went from 154 pounds down to 84 in a matter of months.”
McGeachie said the inflammation in her son’s gut made it hard for his body to absorb nutrients, besides inflicting some debilitating symptoms that were very hard for a teenager to overcome. He gave up on hockey and finished Grade 12 via home schooling.
“There is a lot of depression, a lot of silence, a lot of shame and a lot of anxiety with the disease,” she said.
Her son is now 28 and works in construction. He is also on medication that helps keep the disease in remission.
But her organization, Crohn’s and Colitis Canada, is committed to seeing that Crohn’s and colitis patients are reasonably accommodated so they can better enjoy a functioning lifestyle.
One campaign is GoHere, a push to convince local businesses to allow the public to use their washrooms and identify their willingness with displayed decals.
The group organizes a constant roll of speakers and experts on the disease in its ongoing effort to coax Crohn’s and colitis patients out of self-imposed social isolation.
“What we are really trying to do is address the mental and emotional aspect of it,” McGeachie said.
Brandt, meanwhile, has come to better terms with her disease and works as a frequent volunteer for Crohn’s and Colitis Canada.
Shortly after her diagnosis, she had surgery to remove a portion of her small intestine. It was blocked, inflamed and even punctured and leaking in one portion. The surgery hasn’t entirely ended the attacks, but her overall health has rebounded.
She also decided to study acupuncture because it is one treatment that improved the way she felt after her surgery.
Brandt has also become more willing to be active. She goes camping, something she previously wouldn’t even consider.
“Being out in the middle of nowhere with no toilet is always a bit stressful,” she said, laughing.
Brandt is even looking forward to travelling again after school is completed. It might not be all hostels and backpacks anymore, but she is committed to visits abroad.
Mostly, she refuses to let the disease steal a life from her because of stigma or shame.
“A lot of people won’t talk about it,” said Brandt. “But I really don’t care and will talk about it with whoever I want.”
To learn more about Crohn’s disease and colitis, including how to find local advocates and information, go online to crohnsandcolitis.ca.