Coming full circle: From CMN kid to CMN specialist

Coming full circle: From CMN kid to CMN specialist

At just 14 months old, Abby Ryan was diagnosed with ulcerative colitis, a condition rarely seen in pediatric patients. Complications from that difficult diagnosis-and others that would follow-resulted in nearly four decades of medical procedures, emergencies and treatments.

Because of their unwavering support, Abby calls her parents, Ed and Barb, her heroes. "I owe everything to my parents," she says. "They were just as scared as I was, but they were always by my side sharing positivity and strength."

Abby is also deeply grateful to the many care team members at Emplify Health by Gundersen who went above and beyond to provide her with compassionate care, as well as for the impact of Children's Miracle Network (CMN) Hospitals®, a program of Gundersen Medical Foundation.

Grateful for compassionate care

Due to ulcerative colitis, Abby underwent a total colectomy (removal of the large intestine) at just 3.5 years old. With the goal of restoring bowel function, the surgical team used Abby's small intestine to create an internal pouch called a j-pouch because of the shape. Unfortunately, rather than healing, the j-pouch became infected (called pouchitis), and frequent procedures to manage the infection followed.

At one point, Abby missed more than 60 days of elementary school due to hospitalizations for dehydration and procedures related to pouchitis. The pediatric ward at (what was then) Lutheran Hospital seemed like Abby's second home. During those long stays, though, CMN Hospitals made a positive impact. In addition to the meal vouchers frequently offered to her parents, Abby found the entertainment options helped make the hard times bearable.

"Karen, Barb and Carol, the child life specialists who were called 'play ladies,' were my saving grace," remembers Abby. "They would roll the television cart, stacked high with VHS tapes, into my room. If the chance to watch movies didn't make me feel better, they would distract me with games, arts and crafts or coloring books-all provided by CMN Hospitals."

When Abby was 10, doctors recommended two possible courses of action. To keep the pouchitis at bay, one doctor wanted to keep Abby on high doses of Prednisone with daily growth hormone injections that would last for years. The other doctor recommended ostomy surgery, which would remove the infected pouch and increase Abby's quality of life.

Ultimately, her parents made the heart-wrenching decision to move forward with ostomy surgery. However, during the procedure, it was discovered that removing the j-pouch would cause repercussions to other organs. Abby's parents and her care team decided to leave the pouch in place so Abby could one day make her own decision, but two decades of GI procedures would follow.

Achieving goals and raising awareness

Although the colitis-related challenges persisted into adulthood-and were further complicated by a diagnosis of Crohn's disease at age 19-Abby did not let her health keep her from pursuing her goals. Not only did she enroll at the University of Wisconsin-La Crosse where she eventually earned a B.S. in Elementary Education and a minor in Early Childhood Education, but she also embraced an unexpected opportunity.

"As a high school senior, I was encouraged to compete for Miss La Crosse/Oktoberfest," remembers Abby. "The idea of being in a pageant did not initially interest me because all the surgeries I'd had made the idea of wearing a swimsuit on stage frightening. But after learning I would receive a $250 scholarship just for competing, I was in! That payment would go toward my college tuition."

Soon, Abby became the youngest Miss La Crosse/Oktoberfest in the organization's history. She even went on to earn the titles of Miss Western Wisconsin, Miss Midwest and Miss Mississippi Valley while also competing for the title of Miss Wisconsin four times, finishing twice in the Top 10. As the first ostomate in the event's history, Abby helped raise awareness of colitis and Crohn's disease while serving as a role model for young women everywhere. By age 36, Abby was working as an elementary school teacher and attending graduate school, all while continuing to deal with problems related to the infected j-pouch and Crohn's disease. One day in August 2018, though, she experienced the worst pain of her life, and that pain led her to make the difficult decision to have the j-pouch removed.

Coming full circle

Since the surgery, Abby is healthier than she has ever been and feels that life has come full circle. When COVID shifted the landscape of education, Abby took it as a sign to re-evaluate her career path. After a year as a brand manager at a local media company, she learned about an opening as a CMN Hospitals specialist-a role that felt perfect for her.

From the start, Abby knew that CMN Hospitals provides practical support to families in the form of meal vouchers, gas cards and lodging assistance. But she soon learned the full scope of impact. From grants for medical equipment and adaptive tools, to help with specialized therapy, support from CMN Hospitals helps kids reach their full potential while providing hope and comfort to families.

"As a child, CMN Hospitals made an indelible mark on me and my family," she says. "What an extraordinary gift it is to now be able to connect other families-in their greatest time of need-with life-changing support from CMN Hospitals."

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