WHEN Jen McGregor was growing up, she assumed she was the only one with Crohn’s Disease and facing a life with an ostomy bag.
And she put it off for five years, longer than the now 24-year-old should have, she admits.
So now that she’s writing her first novel, she hopes to make the facts of Crohn’s and Inflammatory Bowel Disease (IBD) easier to access for young people.
The as-yet untitled book will follow 16-year-old Winter two years after she is diagnosed and worried about getting an ostomy bag in case it means she’ll never find love.
Jen, from Dalmuir, said that’s something she feared herself when she was told she had Crohn’s at age 13 and that she’d someday need a bag.
“When I was younger, I thought there would be no hope,” she told the Post. “There’s a huge community of young people who have been told ‘you’re going to need a bag’ and most of us put if off longer than we should.
“The bag has made my life a lot better. Your life does go on.”
The young adult novel will recount Winter’s growing up, mixing the factual reality of Crohn’s, IBD and also sepsis, all things Jen knows from first-hand experience. But putting the clinical into relatable characters she hopes will get the information out there even more than her blog, which she’s been writing for five years.
Jen, who was named West Dunbartonshire’s Citizen of the Year in 2016 for her Crohnie Clothing designs, said the story centres on Winter meeting a boy named Parker and deciding how she will tell him about her bag.
“I was told I would get a bag at some point and my reaction was ‘I would rather die’,” she said.
“I always worried I would not get to date someone and I met my boyfriend Stuart less than three months before I got the bag.
“I want other girls to know that.”
Jen has set herself the target of September to finish her debut novel to send to potential publishers while she’s on the summer break from studying entrepreneurship and marketing at Strathclyde University.
She said: “The more I can raise awareness in an interesting way, people will be more inclined to remember symptoms and facts.
“People seem very attached to a story rather than if it was just the facts and figures – ‘I have this’ rather than ‘one in however many thousands have this’.
“In the beginning, I was trying to included too much of my story, but some doesn’t really translate into a book. I find it a lot easier to write about it fictionally. I want it to be believable but also really interesting. If people feel an attachment to the character, then hopefully they will have similar responses to me.
“Stuff like this happens every day around the country – there are thousands of people dealing with this every day.
“In the first five years, there was nobody I had heard of under 65 who had a bag – it was seen as an older person disease. But there is a huge community. It’s so comforting knowing you’re not alone.”
Jen’s blog can be found at crohnieclothing.com.