It’s a topic that many don’t feel comfortable discussing, but Edmonds resident Lois Fink has taken a gutsy approach to the topic of Inflammatory Bowel Disease (IBD), which affects 1.4 million Americans. She’s helped create a lapel ribbon honoring those living with Crohn’s disease, ulcerative colitis or an ostomy.
Fink and Barb Wodzin of West Seattle, who both have Crohn’s disease (a form of IBD), developed the IBD & Ostomy Awareness Ribbon with two goals in mind: to educate and raise awareness of these conditions, and to remove the stigma of having a bowel disease or an ostomy. “IBD and ostomy surgery have been surrounded by shame, silence and embarrassment for too long, and it is time to allow us to come out of the bathroom and into the living room to talk freely and openly about what we have gone through,” Fink said.
The ribbon is also an awareness builder for Get Your Guts in Gear and IBD Quilt Project, two non-profit organizations that have personal meaning for Fink and Wodzin. Get Your Guts in Gear raises awareness of Inflammatory Bowel Disease and related conditions through multi-day cycling events. The IBD Quilt Project generates public awareness for Crohn’s disease, ulcerative colitis, colon cancer and ostomy surgery. Crafted by and for the IBD community, the quilts provide an outlet to express the thoughts and experience of living with these chronic diseases, as they tour the country for education and support.
Fink had symptoms of Crohn’s disease at age 11, which progressed into her teen years. Misdiagnosed by numerous physicians as nervous, she collapsed in high school and rushed to the hospital for an emergency appendectomy. She woke up instead to the diagnosis of Crohn’s disease, and weighed 62 pounds. In spite of aggressive steroid therapy, a restrictive diet and a second bowel resection, the disease ravaged through her colon and rectum over the next 17 years, causing humiliating accidents due to bowel incontinence. In 1986, she made the decision to have her diseased colon and rectum removed, resulting in a permanent ileostomy. Today, Fink leads an active lifestyle, and wishes she’d consented to ostomy surgery sooner. “Sadly, there are many fears surrounding this surgery, assisted by the media’s reluctance to negate them, and in some cases, adding to the negativity, that people would rather die than live a full, active life with an ostomy,” she said.
Fink’s experiences are further detailed in the most recent issue of UW Today, the University of Washington magazine. Fink works in the UW’s Speech and Hearing Clinic.