Zoe Ware has had enough of the stigma.
The 34-year-old Kamloops woman has lived with Crohn’s disease for 15 years.
“Let’s talk about it,” she said. “Life will go on. It’s just shit. We all do it.”
November is Crohn’s and Colitis Month in Canada. Ware said she’s hoping to raise awareness of the diseases.
Ware found out something was wrong the day after she turned 19.
She said she celebrated her birthday at the Blue Max in Kamloops.
“I tied one on and woke up the next morning with a really, really bad gut ache,” she said.
“It didn’t go away.”
For three weeks, Ware visited walk-in clinic after walk-in clinic and couldn’t get a straight answer about what was going on inside her insides.
“I kept going back and back and back and then, finally, found a doctor who knew something was wrong,” she said.
“It took me about three-and-a-half to four weeks to get a diagnosis.”
“Read up on it. Ask questions. Don’t be afraid to ask. You’re not going to offend anyone — especially someone with a bowel problem.”
The Brock secondary grad was taking early-childhood education courses at University College of the Cariboo at the time, but the Crohn’s diagnosis put everything on hold.
“I decided I was going to grow up,” Ware said.
“I’m very happy I made that choice, but it had a big impact on my social life.”
Ware said she lost friends and noted some family members weren’t sure how to deal with the diagnosis.
For six months, she was on a steroid regimen.
It caused her to gain 30 pounds and led to the growth of excess body hair.
It appeared to be working. But, when she stopped taking the drugs, the symptoms returned.
Surgery was the next option, but it only complicated things further.
At the age of 20, Ware began taking immuno-suppressant medications to treat her Crohn’s — drugs that bring with them an increased risk of cancer.
“It’s a catch-22 with this disease,” she said. “You take the side-effects over the gut pain.”
Then another surgery. And another recovery. And another surgery. And another recovery. And another surgery. And another recovery.
By now, Ware was 22. She’d tried to return to school, but her illness made it too hard.
“I felt depressed,” she said.
“But, I had good family support with my mom and my brother and my dad.”
In late 2002, Ware was receiving an enema after nine weeks of treatment for — of all things — constipation.
“I decided right then and there, on that table, that I was done with everything,” she said.
“I asked for a bag.”
A bag, in this case, is a colostomy bag. On May 28, 2003, Ware had her rectum, anus and large colon removed and the bag was hers.
There was one complication after the surgery but, since then, Ware has been fine — all things considered.
“I’ve been good ever since,” she said.
“I’ve been in remission for 10 years and it’s the best thing ever. I feel lucky.
“I say I’m lucky because there are so many people out there who have it worse than me.”
These days, the problems Crohn’s causes for Ware are relatively easy to deal with — things like sore joints and muscles, loss of appetite and bowel obstruction.
She also can’t conceive naturally, but she and husband Ernie are looking into adoption.
“My life is a challenge and it is tough,” she said. “But, why I want to talk about it is the stigma — the poop.
“We all do it. We all fart and shit. A lot of it, for me, is bringing the stigma down.”
Ware said she hopes people become more knowledgeable about Crohn’s and colitis.
“The goal is more awareness,” she said.
“Read up on it. Ask questions. Don’t be afraid to ask.
“You’re not going to offend anyone — especially someone with a bowel problem.
“Chances are they’ve already lost their dignity a number of times.”
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