Crohn's Disease: Leah's Story
Leah’s experience as a young adult in a children’s hospital inspired her college thesis
Leah Steinacker was a busy, active high school senior when sudden, severe stomach pain landed her in the hospital at Children’s Mercy. At 17 years old, she noticed that she was older than most of the other kids on the unit, but respectful, personalized care from her nurses and physicians made her treatment experience better than she had expected.
Searching for the source of stomach pain
Leah had episodes of stomach pain every few months – an intense, dull pain with nausea and vomiting. Typically, it would pass after a day or so, and she chalked it up to a stomach bug and nothing too serious. But one day, that changed dramatically.
“I was sitting at school and had pain throughout the day,” Leah recalled, “and that evening, I went to a nearby emergency room and then was transferred via ambulance to Children’s Mercy. It was a whirlwind – everything happened within 2 or 3 days and then I was in the hospital for the next week or so, recovering.”
Leah’s care team suspected Crohn’s disease or ulcerative colitis was the source of her pain. Crohn’s and ulcerative colitis are both types of a chronic illness called inflammatory bowel disease (IBD) that affect the digestive tract. Although the first few days of her hospital stay are a bit of blur, one thing really stands out in Leah’s memory: “I remember feeling particularly seen and respected by the nurses. They were speaking to me as an actual person with decisions and thoughts. My input, my feelings, and my pain were really being heard and listened to.”
After a bowel resection procedure and extensive testing, Leah was diagnosed with Crohn’s disease and got connected with Children’s Mercy GI specialist Valentina Shakhnovich, MD. “I have clear memories of Dr. Shakhnovich being there for rounds, talking to me specifically and asking how I was feeling. There was a personal touch and an energy to her that I really connected with. She made me feel like this isn’t the end of the world and this is something I can deal with and still thrive,” Leah shared.
Navigating a new normal
Crohn’s disease is an autoimmune condition where the immune system goes into overdrive and attacks the small intestine, the colon, or any other part of the digestive tract. There is no cure, but Leah has been on a journey to figure out which treatment works the best for her. “I’ve tried a few different biologic medications and been through lots of experimentation with my diet, but I feel like now I’m in a good place with the foods I’m eating and my medications,” she said.
Her closeness with Dr. Shakhnovich has made Leah’s journey feel more manageable. “Dr. Shakhnovich is the most stellar health care professional I’ve ever interacted with,” Leah shared. “She really changed my life in a positive way. As stressful and crazy as this diagnosis has been, she’s made it not completely horrible.”
At Leah’s GI clinic appointments, she appreciated the way Dr. Shakhnovich and the entire clinic team treated her with respect and consideration. “She saw that I was trying hard and taking action steps to be in better control of diagnosis and not just let it be something that was happening to me,” Leah recalled. “She came into every appointment with such great energy and kindness and deep-seated compassion.”
Dr. Shakhnovich also emphasized the importance of connecting with the patients she sees. With Leah in particular, “Listening and not judging made our connection stronger,” Dr. Shakhnovich said. “Kids are smart! They know when you’re hiding things or when you’re sugarcoating. I find that it’s best to be honest with kids in terms that are less scary so we can work together to make it better for them.”
Taking steps toward transition to adult care
Because Leah was almost 18 when she began to receive care at Children’s Mercy, she had to start working towards transitioning to an adult GI specialist sooner than she would have liked. “Dr. Shakhnovich recommended an adult provider for me and helped me become comfortable with things like scheduling appointments myself, taking notes at appointments, and communicating with my care team. It was really hard to transition away from her care and from Children’s Mercy as a whole, but I’m so glad I was able to experience it for the time I was there.”
Tough experiences lead to innovation
Even after Leah transitioned to an adult provider, Dr. Shakhnovich’s influence continued to shine through as Leah worked toward a Masters in Interior Architecture and Product Design at Kansas State University. Her capstone thesis project – which she dedicated to Dr. Shakhnovich – was a prototype of a children’s book, app and medical doll that kids could use while in the waiting room at a medical appointment to help them feel more comfortable before a needle procedure like a blood draw or IV.
“I had the pleasure of caring for Leah through multiple medical treatments, surgery and oh so many pokes and IVs,” said Dr. Shakhnovich. “I was extremely touched by Leah’s thesis project and toy design idea, as well as her dedication of this work to me. She is a delightful young woman and I couldn’t be prouder of her accomplishments!”
After completing her degree in 2022, Leah is now working for an architecture firm as an interior designer. While she’s not sure whether she will take her thesis project in the direction of seeking funding for further development, “I loved the people at Children’s Mercy so much and I thought this would be a small way to show my appreciation for everyone there who helped me,” Leah said.
Hypersensation of the gastrointestinal tract: Amarissa’s story
At 4 ½, Amarissa Hampton has struggled with painful constipation since birth. Finally, she was referred to the Gastrointestinal team at Children’s Mercy, and after a lengthy hospitalization, she’s doing better than ever. Now she’s enjoying her favorite foods, like ice cream and pizza, she has lots of energy, and she’s thriving for the first time in her young life.
