Chris Jamael was 19 when she found out why she was suffering from extreme fatigue and abdominal pain for five years.
She had Crohn’s disease.
Now 48, Jamael said she’s seen many advancements in treatments for Crohn’s and ulcerative colitis, diseases that cause inflammation of the gastrointestinal tract lining.
“When I was first diagnosed, there were no biological medications for Crohn’s,” Jamael said while doing laps around the Membertou Sports and Wellness Centre track during the Sydney Gutsy Walk fundraiser.
Some symptoms and signs Crohn’s disease and colitis:
- Abdominal pain, cramping
- Nausea and vomiting
- Fatigue
- Fever
- Lack of appetite, weight loss
- Diarrhea, bloody stools
- Rectal bleeding
- Sores in mouth, around anus
- Anemia
For 10 years, Jamael did “whatever the doctors told me to” and tried many different medications. Some worked for her, others didn’t. The ones that did often needed supplementary medications to offset the side effects. At one point, Jamael was taking 28 pills each morning.
“That was the worst for me,” said the Halifax native who now lives in Sydney with her husband and two teenage children.
“In my hand, I couldn’t hold them all. They wouldn’t all fit into one pill bottle.”
When she was 29, Jamael had her first surgery, which led to a 21-day hospital stay and six months recovery at home.
The surgery caused the disease to go into remission for 10 years. But flare-ups started again in 2010 and as she prepared for treatments again, Jamael noticed the changes in the amount of information available online, as well as changes to the types of medications and surgery recovery time.
When she had her second surgery at age 40, Jamael spent seven days in hospital and two months recovering at home.
“The difference between the two surgeries was like night and day,” she said.
These advances are part of the reason Jamael believes the national Gutsy Walk, which raised more than $16,300 in Sydney this year, is so important. It’s also why she thinks talking about the disease is equally valuable.
“It’s different now because everyone talks about it,” she said while doing her laps around the track. “My grandmother had it but nobody knew until I was diagnosed.”
Jamael talked to Carrie Ramsay and her daughter Tessa about the disease when Tessa was diagnosed with Crohn’s in 2015 when she was 15.
Their daughters danced at the same studio in Coxheath and although Jamael didn’t know them personally, she reached out after hearing Tessa’s diagnosis.
Ramsay said Jamael would come to their house and ask to speak to Tessa alone, sharing her personal experiences with her.
“At the hospital, Chris would come in and her presence was the best thing,” Carrie Ramsay said. “She would tell her stories, sometimes funny and sometimes serious.
“The cloud in the room was lifted and we were happy for the time she was there.”
Like Jamael, Ramsay believes talking about the disease is important as people’s perceptions of the disease can be much different than the reality.
“People will say, ‘Tessa looks great,’ and I’ll say, ‘Yup, but her insides are rotten,’” Ramsay said.
“Tessa’s Crohn’s has nothing to do with going to the bathroom. It’s strictly abdominal pain. There needs to be that awareness. Crohn’s doesn’t need to be diarrhea.”
Donations to the Sydney Gutsy Walk are being accepted until July 15 and can be made online at gutsywalk.ca.
To find out more about Crohn’s or colitis, go to crohnsandcolitis.ca.
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