Zimmerman began to write.
“This is when things began to change for me,” said Jackie.
As she blogged about the isolation of being diagnosed with ulcerative colitis and having her large intestine removed, Jackie began to hear from other women who like her were facing the same sense of isolation and fear.
“I realized that I was not alone,” she said. And she learned something else. “While I couldn’t control my illness, I could control my attitude,” Jackie said.
Forming Girls with Guts
She drew energy and support from a caring community of other women who suffered from ulcerative colitis or other Inflammatory Bowel Diseases. She felt that there truly is power in numbers. And it was that lesson that ultimately helped her and a core group of other bloggers to come together to create Girls With Guts, a nonprofit that supports girls and women with some form of Inflammatory Bowel Disease, including Crohn’s and ulcerative colitis.
23andMe first heard about Jackie when we launched a new study on IBD in collaboration with Pfizer Inc. The study will look at the role genetics and environment plays in the development and progression of IBD, which affects more than 1.4 million people in the United States alone.
We’re very close to completing enrollment in the 10,000 person study – stay tuned to hear more about it. As we approached that milestone it prompted us to check in on Jackie. First diagnosed with ulcerative colitis in 2009, Jackie had her large intestine removed about a year later. And it was during this difficult time that she started writing about her experience on her blog Blood, Poop and Tears. She was one of several bloggers who used humor and candor to connect with their audience. Then during a weekend get together with other women IBD bloggers, the idea for Girls with Guts was born.
Finding and Offering Support
This core group of five women realized that there was a large group of women all around the world, who craved connection, and needed support, as well as a safe place to discuss their struggles with IBD and how it might play into existing body image issues. She wanted to help other women with the condition feel not just confident but beautiful too.
The website offered not just resources for those with IBD, it also offered people with a place to share stories, and offer support. The site is particularly important for those can’t leave home because of their condition. But Jackie also wanted to bring people together for real. Having volunteered at a summer camp for kids with IBD, Jackie thought why not create something similar for adults. The summer camp helped encourage young people with IBD to get out, be a little adventurous – not always easy to do with the condition – and connect with others.
“It was such a warm and welcoming place and I wanted to recreate that for adults,” she said.
And that’s where the idea for Girls With Guts Retreat came from. Launched in 2013, the retreat has steadily grown each year, bringing together a few dozen women with IBD. “The in-person live connection is a game changer,” she said.
“They create strong relationships.”
Beyond the relationships Jackie is trying to forge and the support, she wants to change how people with IBD think about the condition. She knows from experience that when a person is newly diagnosed all they hear are the negatives. It’s understandable, but it can also be scary and depressing. It doesn’t have to be that way. By talking about IBD, by connecting people with the condition, Jackie believes she can change attitudes and give hope.
“I want people to know that even with IBD they can still be happy and healthy,” she said.