August 17, 2011
Gutsy ribbon dispels myths and stigma surrounding bowel disease and ostomy
UW staff member Lois Fink and her friend Barb Wodzin dont want other people with gut diseases to go through what they went through. Thats why they created a new ribbon campaign to dispel the myths and stigma surrounding inflammatory bowel diseases (IBD) and their treatment. The ribbon is a rich brown, with a red crystal representing ostomy, a surgical redirection of the bowel to create an alternate route for waste removal.
Lois and Barb both have Crohns disease. Lois is one of about three-quarters of a million Americans living with an ostomy due to colorectal cancer, birth defects, bladder cancer or inflammatory bowel disease.
Dr. Tim Zisman, assistant professor of medicine, Division of Gastroenterology, noted, “She uses her own personal experience as a patient to connect with other patients and to encourage others to overcome their fears they may have about speaking openly about their disease.”
When Lois was a girl in Pittsburgh, she was extremely thin, had repeated bouts of fever, leg cramps and abdominal pain, and made frequent trips to the bathroom, even at night. As Lois entered her teen years, her mother became worried because she wasnt going through the usual physical changes of adolescence.
Trips to the doctor resulted in her condition being dismissed as nervousness, or to invasive diagnostic procedures for which the young girl was not properly prepared. No one could figure out what was wrong.
To avoid more humiliating doctors visits, she tried to hide her symptoms at home and at school. Not until she passed out at school and was taken to the hospital with suspected appendicitis did a surgeon see the inflammation characteristic of Crohns disease.
Eventually she reached a point where she couldnt accept a job she wanted because the restroom was on a separate floor. Her world narrowed. She mostly stayed at home, reluctant not to be more than a few steps away from a familiar bathroom.
When her doctor suggested ostomy surgery, she cringed at the idea. Then a confident, stylish woman who had an ostomy met with her to answer her questions about the procedure. At her first sight of an actual stoma and pouch, Lois was surprised, “Why, thats nothing to be concerned about!” Undergoing the procedure, Lois said, “Was one of the best things I ever did for myself.”
Because she no longer had to fear an episode of incontinence, she was free to leave her home. Her life opened up before her. She traveled to places she had always wanted to see. She has a job she loves, and people she enjoys working with, at the UW Speech and Hearing Clinic.
Barbs diagnosis of Crohns came after six months of testing. She was worn out from frequent bouts of diarrhea, and was forced to take a leave of absence from work. After a year of treatment, she began to feel normal again. She said she was helped by meeting with others with IBD who understood the pain and embarrassment.
“Patients often view their disease as a choice between intolerable symptoms or intolerable side effects from the medication,” said digestive disease physician Zizman. “In reality, the treatment options for IBD have improved dramatically over the past few years. Patients should now expect to be in remission and enjoy a high quality of life.”
They volunteer with “Get Your Guts in Gear,” a biking and camping expedition for people who have one of these disorders. They are also involved in an IBD Quilt which gives expression to the thoughts and experiences of those who have the disease.
Barb and Lois talk honestly and directly with people to help them understand IBD from a personal perspective, to remove the shame that makes people reluctant to talk with their doctor about their symptoms and to help those affected find ways to live a satisfying life. They also help health professionals to improve their approach to bringing up the topic and to educating patients about managing the disease in day-to-day life,
“Patients need to be active partners in their disease management,” Zisman said, “and need to engage their physicians in dialogue about their symptoms and concerns. IBD is a multidisciplinary disease and patients benefit from a team approach to its management at centers of excellence.”
In addition to Zizman, several UW health-professionals are sporting the brown ribbon as a way of starting discussion with patients, who ask what the ribbon color means or who smile because they have already caught on. Wearing the ribbon also shows their concern for those who have these conditions.
Lois and Barbara laugh about their initial attempts to make the ribbons on their own and inadvertently gluing their fingers together. Now they are hearing from a variety of clinics and physician practices, as far away as Australia, who want the ribbons on hand for themselves and their staff.
“We try to help people get beyond the taboo that one doesnt mention such things in polite company,” Lois said. “People have suffered in shame and silence for too long.”
The Ribbon has taken on a life of its own. It has a Facebook and a website which convey its dauntless personality.
Its creators hope the education and awareness The Ribbon personifies brings greater freedom to many people who previously had been held back by fear, and by what they saw as the insurmountable constraints of their conditions.
Lois and Barb have inspired and comforted others by going forward with a sense of adventure, courage and perseverance. Loiss story is featured in the book, Great Comebacks from Ostomy Surgery, compiled by former National Football League placekicker Rolf Benirschke. The book features the success stories of 15 individuals who thrived after the procedure. Benirschke picked himself up after a diagnosis of ulcerative colitis followed by an ileostomy. He returned to the game to play seven more seasons.
Staying engaged in the world can be life-enhancing. Zisman pointed out the numerous opportunities for patients and others affect by IBD to get involved with fundraising and community building through local chapters of national organizations concerned with gastrointestinal diseases.
He said, “This is a great way to get involved, make a difference, and meet some amazing people (like Lois).”
As a teenager an angry Lois shouted to her father, “Why me?” Her dad, who has since passed away, replied gently. “Perhaps later in life you will be able to encourage someone else because of what you are going through. Youll know what to say and how to help.”
Lois recently received a distinguished service award from the Northwest Chapter of the Crohns and Colitis Foundation of North America for h
er work on the Restroom Access Act bill.