Kamloops support group working to spread understanding during Crohn’s and Colitis Awareness Month

Kelsey Hine, the Vice President of the local chapter for Crohn’s and Colitis support, says this month they’re hoping to spread some understanding.

“If people don’t have the opportunity to talk about it, and they don’t feel like people understand them, they can be really isolated.”

She says the disease can range from active symptoms and flare-ups, to periods of remission.

“I still find all the time that if I tell people that I do have Crohn’s, that they have absolutely no idea what I’m talking about. They’ve never heard of the disease at all, they don’t know anybody who has it,” she says. “But the numbers are actually increasing — we’re at about 1 in every 140 Canadians now.”

A big part of managing discomfort with any kind of inflammatory bowel disease includes planning meals, and making sure there is a place to go, should symptoms flare-up. Hine says for many people, anxiety and stress are huge parts of living with the disorder.

“Probably the most common symptom that people know about Crohn’s and Colitis is that you need to make frequent bathroom trips,” explains Hine. “For somebody that’s really ill, I understand that can be up to 20 times a day. It can be very very frequent, it can be urgent, and if you’re newly diagnosed that can give you a lot of anxiety if you’re going to go out in public.”

Amrita Ebata has dealt with Crohn’s for much of her life. Now in remission, she credits the biologic drug she was prescribed as part of why her symptoms dissipated.

“I was diagnosed with Crohn’s disease when I was 12 years old,” she says. “Being an adolescent, it was tough because going through high school and not really knowing how the disease worked and how it was going to impact me was really tough on myself, and my family.”

Lately, Ebata says she is concerned her condition will change. Her biologic medication Remicade is being switched to a biosimilar, which is a less expensive, generic version. The BC Government announced the move earlier this year as a cost-saving measure for the province.

Ebata says she’s been reassured by health care professionals that the makeup of the medication will be the same, but given her state of remission and recently having a child, she still worries symptoms could resurface if her body is thrown off somehow by the medication change.

“Having the switch is definitely… you have to think about it a lot to see how it’s going to impact you,” says Ebata. “I have a two-month-old daughter and just not knowing the long term effects of how this could potentially impact her, it’s tough. It really is.”

Between navigating symptom treatments, and new medication, those who have lived with Crohn’s or Colitis for years, like Ebata, believe strong communication with health care professionals is key.

“It’s definitely a two-way street,” notes Ebata. “Making sure you’re taking care of yourself, having that support, and also having the trust in your doctors for sure is really important.”

Beyond awareness month, Hine says the support group in Kamloops says it’ll continue to offer monthly meetings for people to share experiences and build confidence.

“Our chapter used to be run by somebody who didn’t actually have the disease, but was supporting his wife with the disease,” says Hine. “Because it can affect a lot of people, it doesn’t just affect the people who have it. It affects their families, their friends, it affects their coworkers to some degree sometimes.”

The group hosts Crohn’s and Colitis Conversations on the fourth Tuesday of every month (excluding December) at the United Way XChange from 286 Tranquille Road.

To access the Facebook page for further information, click here.

by Dylana Kneeshaw

Kamloops support group working to spread understanding during Crohn’s and Colitis Awareness Month

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