Advertisement It’s not unusual that the former Miss La Crosse-Oktoberfest, Miss Midwest Wisconsin and Miss Western Wisconsin and current Miss Mississippi Valley chose a medical theme. But she chose something that many people don’t want to talk about — inflammatory bowel disease, such as Crohn’s disease and ulcerative colitis.
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UW-La Crosse student teacher Abby Ryan conducts her third grade class Thursday at Southern Bluffs Elementary school in La Crosse.
PETER THOMSON photo |
“It’s my life story,” Ryan said.
As 2001 Miss La Crosse-Oktoberfest, Ryan finished in the top 10 at the Miss Wisconsin Pageant and won the state community service scholarship for work on her platform.
Ryan wore a two-piece, bright pink swimsuit on stage in front of thousands of people at the state pageant. But many didn’t realize she also was wearing an external ostomy bag, which collects her intestinal wastes. In fact, she has worn that bag since age 11.
“I can hide it quite well,” Ryan said. “I hid it quite well for so many years because I figured people didn’t need to know what was in my pants. Now when people ask, I tell them. It’s an opportunity to educate people.”
The 23-year-old La Crosse native wants the world to know about inflammatory bowel disease, which affects 1.4 million Americans with about 750,000 living with an ostomy.
“The disease is not a death sentence,” Ryan said. “It’s a completely manageable disease, and the more people know, the better equipped they will be to handle it.
“It’s nothing to be ashamed of, but something to be aware of,” she said. “I’ve lived with it all my life, and I have realized the need for awareness, and I can make a difference in making people more aware.”
Ryan, who will graduate May 12 in elementary education from the University of Wisconsin-La Crosse, said she wants to be an elementary school teacher in La Crosse.
But her other goal is to be the first Miss Wisconsin who has had an ostomy. She has one more year of eligibility in Miss Wisconsin pageants. “I’ve always had a voice, but if I become Miss Wisconsin, that voice will be amplified for the Crohn’s-colitis and ostomy community,” Ryan said. “My passion is strong and my dedication is stronger.”
Last year Ryan was the national winner of the $2,500 Ina Brudnick Scholar Award as part of the Great Comebacks Program sponsored by the Crohn’s and Colitis Foundation of America. She was recognized for her perseverance in living with the disease and providing hope to thousands of other children and young adults with the disease.
Ryan has talked to many groups and has been invited to speak at national conferences on her disease and other chronic diseases. She is constantly
raising money for Crohn’s and colitis research and has participated in many fund-raising events.
She also has been a counselor at camps for children with inflammatory bowel disease. “I bring my crown, and these little girls are in awe,” Ryan said. “I tell them they can be a queen, too, or anything else they want to in life.”
A medical journey
Ryan was born a healthy baby, but had frequent diarrhea as an infant. She was diagnosed with ulcerative colitis at 14 months old. At age 31/2, she had her large intestine removed with a colectomy and received a J-Pouch reconstruction in which an internal pouch was created after her colon was removed to treat ulcerative colitis.
She said her life was never normal again because of chronic pouchitis, an inflammation of that internal pouch.
“I seemed to always be in the hospital because of severe pain and dehydration when I was between the ages of 4 and 10,” Ryan said. “I was constantly being given different medications to try to alleviate such symptoms, but all trials failed.”
She was placed on high doses of prednisone when she was in third grade.
“I transformed from a petite, energetic second-grader to a chipmunk-faced, large, sluggish third-grader,” Ryan said. “I was constantly teased due to my weight and the fact that I was always in the bathroom. At times I was labeled a ‘suck-up’ because I would not need a bathroom or pass or even have to ask to go to the bathroom.
“I had very few friends. I didn’t let myself get close to people,” she said.
Her pouchitis had not settled down and she was not growing normally due to the prednisone. “My quality of life was nearing zero,” she said. “My parents decided to give me a life.”
In February 1994, Ryan had ostomy surgery, which involves bringing the small intestine through a hole in the abdominal wall, allowing drainage of intestinal waste out of a body. In her case an ostomy bag serves as a collection vessel.
“My life was amazing,” Ryan said. “I did not have to run to the bathroom every 10 minutes because of uncontrollable diarrhea. When I was walking through a department store, I did not have to stop and cross my legs in fear of an accident. I was able to go to sleepovers because I did not have to wear pull-ups at night anymore.
“Adjusting to my ostomy was certainly a challenge, but as each day passed without the familiar pain, bleeding, diarrhea and dehydration, I became more confident with my new life,” she said.
“I had a life. My confidence level was sky-high and so was my quality of life. I began to date, socialize, join extra-curricular activities and expand my circle of friends because of my confidence and the fact that I had no restrictions anymore.”
Before her surgery, Ryan was always absent from school and her studies and grades suffered.
“It pained me not to be in the classroom with my classmates,” she said. “I was not eager to learn because my mind was concentrating on the next time I may have an accident and what I was going to do when this time came. If I wasn’t concerned about accidents, I was focusing on abdominal pain.”
A new life
After surgery, Ryan said she became an A student. At Central High School, she graduated 21st in her class of 287. She was a member of the National Honors Society, prom and homecoming courts, junior class vice president and senior class treasurer. At UW-L, she has made the dean’s list five times and is a member of a Kappa Delta Pi, an education honor fraternity.
Ryan said she loves to sing, and her surgery allowed to participate in choir, including Central’s Grand Central Station show choir. “I was free to use my muscles during singing,” she said.
She sings for her talent portion of pageants and now is a member of the Grand River Singers, an adult show choir.
Ryan said she used to change her ostomy bag every two to three hours. Now she does it every five hours or so.
At the time of her ostomy, the original plan was to remove her J-Pouch, but it had pouchitis so many times that it had become hardened and adhered to her reproductive organs. She kept the J-Pouch, but has had to have regular corrective procedures, sometimes as frequently as every 3 months.
In 2003, she began to experience familiar symptoms of abdominal pain, fatigue and dehydration. She was diagnosed with Crohn’s disease. She has taken my medications and now takes one medication, Humira.
Since then, she has had two life-threatening episodes — a battle with flesh-eating bacteria in 2004 and an unusual complication after one of her procedures to treat pouchitis after winning the Miss Midwest Wisconsin in 2006. During the procedure, pressurized air had to be inserted, but her J-Pouch had a perforation in it and the pressurized air traveled throughout her whole body.
“I puffed up like the Stay-Puft Marshmallow Woman,” she said. “The air put much pressure on my chest and collapsed my left lung. I was in the ICU for 21/2 days fighting for my life. I was in the hospital for eight days. I missed one month of college classes, but was determined to return.”
Her doctor, Dr. Frank Aberger, said Ryan has faced great adversity, but has used her experiences to inspire others.
“She has great courage and perseverance, and optimism that is contagious,” Aberger said. “She’s a wonderful person and I’m honored to be her physician.”
Ryan said her ostomy has never gotten in the way of her goals, hopes and dreams, but has helped her accomplish them. She wants to inspire and motivate others to live life to its fullest.
“Life is a precious pearl that needs to be protected, but also needs to be unleashed without fear,” Ryan said.
ABOUT INFLAMMATORY BOWEL DISEASE
SOURCE: Crohn’s and Colitis Foundation of America (www.ccfa.org)
TO BOOK RYAN
Abby Ryan is constantly raising money for research for inflammatory bowel disease and speaks to groups locally and nationally. If you would like to make a donation or have her speak to your group, e-mail abbyryanspeaks@yahoo.com. She also is raising money for the Children’s Mira-cle Network, a partner with the Miss America Pageant.
