Not alone

Natalie Wells knows how hard it is to live with Crohn's disease.

But she also knows that it is something you can live with and now she's getting ready to share her story - the ups, the downs and the successes - with other young people who have Crohn's or ulcerative colitis, the two forms of inflammatory bowel disease (IBD).

Wells was diagnosed with Crohn's in January 2002 during her final year of high school.

She was recently selected to serve on the Crohn's and Colitis Foundation of Canada's (CCFC) Youth Advisory Council.

The YAC group held its first meeting during the CCFC's Congress 2007 in Toronto from Oct. 11 to 14.

Wells has been volunteering with the CCFC since April 2006. She and Stephanie March have been working to revive the CCFC in the Corner Brook area and have organized many fundraisers under the Corner Brook Affiliate.

She learned about the CCFC's Youth Advisory Council from Julie Bowering, the foundation's regional director in St. John's, and applied to become part of it this past summer. In September she was selected as the only youth from Newfoundland and Labrador to sit on the council.

"The YAC is a small group of 12 youth, age 15 to 24, from all across Canada who will be working together along with the CCFC to help bring new ideas to the foundation, to help create awareness and to get volunteering information out there to youth," says Wells.

The YAC group is currently working on coming up with a name that represents not only the members as youth, but still incorporates it as part of the CCFC. The group is also working on developing a website.

"There are so many youth from across Canada suffering with IBD, so the YAC also wants to act as a voice for the youth," says Wells.

"We're in the process of coming up with more ways to incorporate and include youth in the CCFC. We're also trying to come up with new ways to communicate with youth and get the message out there about Crohn's and colitis."

Wells says these diseases are not talked about enough.

"They have been left uncovered because they're not something pleasant that everyone wishes to discuss.

" We want to change that and let youth with IBD, and everyone, really, know they have somewhere to turn if they have questions or concerns about the diseases and let them know there is a group of young people (the YAC) out there who can relate to them and their situation with IBD," says Wells.

"Each of the 12 youth who are on the YAC have their own flare that they bring to the group.

"We are all very different individuals of various ages and we each come from very different backgrounds and different parts of the country. Even though we're very different from one another, we each have one thing that unites us all - we all want to see a cure for Crohn's and colitis.
"And in talking to other people at the congress, all are extremely optimistic that a cure for IBD will be found," says Wells.

As for her role with YAC, Wells says she'll bring her own perspective, experiences, knowledge and ideas to the group.

"I've had a lot of ups and downs since being diagnosed. I could go for a few months at a time and be fine, but other times I could be in a flare up for a couple of days to a week or up to a couple of months at a time."

But that hasn't stopped her from completing a bachelor of science degree with a major in psychology at Sir Wilfred Grenfell College.

She's now in St. John's taking some linguistics courses at Memorial University and plans on pursuing a career in speech pathology.

"Getting through university was at some times challenging, as flare-ups would occur with no warning and I'd have to miss classes and exams," says Wells who is on medications to control her Crohn's.
"The stress and student lifestyle in university doesn't really help Crohn's disease patients."

At one point in the winter 2005 she was hospitalized so many times that she didn't think she would pass the semester.

Wells says being able to complete her degree at home was helpful to her and she says a supportive family, friends and doctors helped her get through. She also says her professors were understanding of her situation.

Even though she's living in St. John's now, Wells is still working closely with March on activities for the CCFC in Corner Brook.

For more information on the YAC, or to get involved with the Corner Brook Affiliate of the CCFC, contact Wells by e-mail at nit_nat@hotmail.com.