Crohn's Disease: Bailey's Story
A bowler, clarinet player and believer in looking on the bright side of life, Bailey just turned 15 years old and is a freshman in high school.
If you met her in passing, you’d never suspect what her family and close friends know: Bailey’s positivity has been hard won, and her full participation in high school life is something she never takes for granted. Bailey has been living with Crohn’s disease for almost half of her young life.
Bailey was finishing up her second-grade year when the symptoms first started. Stomach pain and digestive problems made the normally energetic 8-year-old sluggish. “I wasn’t eating,” recalled Bailey.
“She was experiencing weight loss, a loss of energy, and an inability to do some of the things she would normally do,” remembered Kerry, Bailey’s mom.
Things like standing in line for an amusement park ride or going to an outdoor soccer practice began feeling impossible as Bailey’s symptoms got worse.
“I would kind of take it on myself and do what I needed to do,” Bailey remembered, “but I would be bummed out if I missed something, and I was confused about what was happening to me.”
Kerry scheduled an appointment for Bailey with the Gastroenterology team at Children’s Mercy Kansas City. A scope confirmed that Bailey was experiencing symptoms of Crohn’s disease, an inflammatory bowel disease (IBD) that can affect the entire digestive tract.
“Right now, there’s not a cure for IBD,” said Julie Bass, DO, Bailey’s gastroenterology physician and Medical Director of the IBD program, “but there are good treatment options to help our patients heal their inflammation, improve symptoms, and have a better quality of life. Our goal is to get them feeling back to normal as much as possible.”
Dr. Bass started Bailey’s treatment with a short steroid course to calm the inflammation quickly and an oral immunomodulator for Bailey’s maintenance medication to help keep her Crohn’s disease under control long term.
“We slightly suppress the immune system to help the inflamed areas of her intestine to heal and stay healed,” explained Dr. Bass. “We wanted to keep symptoms under control, make sure she had a good appetite and good energy level, and ensure she could grow well. Those are things we are looking for with treatment, while watching for symptom improvement and clinical markers that indicate a good response to therapy.”
“We were pretty lucky,” said Kerry. “The oral medications helped us get back into a very controlled state, and that really helped stabilize things for years.”
Adjusting to a new diagnosis and an intense daily intake of pills would be a challenge for any kiddo. Bailey and Kerry sought the help of Michele Maddux, PhD, Gastroenterology Clinical Psychologist on the IBD Team.
“We want to make sure that not only are we getting physical symptoms under control, but that we make sure Bailey is attending school, able to participate in normal activities and keeping up with her otherwise healthy peers,” said Dr. Maddux. She first met with Bailey in 2015, as Bailey got used to living with Crohn’s and her new medication regimen.
“I could take a few pills, but not all of them,” remembered Bailey. “Sometimes I had to have the liquid form or do things like use a syringe or crush them up into my applesauce.” Dr. Maddux helped her problem-solve pill swallowing and settle into the new routine.
“Dr. Maddux has been someone we routinely touch base with to help us through these transitions,” said Kerry.
Having a full-time psychologist—not to mention a dedicated pharmacist and nutritionist—is a unique feature of the multidisciplinary IBD Team at Children’s Mercy.
“Patients do best when their diseases are well controlled, that’s an essential step, but also when their psychosocial needs are being met,” Dr. Maddux said. A big part of her job is helping patients and families find that equilibrium. She tries to normalize the challenges of living with Crohn’s or IBD.
Dr. Maddux explained that empathy, combined with their team-based approach, helps give patients and their families a strong base of support.
“We’re part of their village; we’re going to be guiding them through this,” Dr. Maddux said. “We’re going to be there when they experience a challenge or hurdle to get them to the other side.”
Bailey has definitely experienced hurdles.
“Around the spring of 2020, we noticed things weren’t quite right,” said Kerry. “She got pretty sick.”
Bailey’s intestines and stomach were hurting, her energy was waning, and she was able to do less and less of her normal activities. Then she came down with a high fever that lasted days. They knew they were at a breaking point, even if they were reluctant to go to the hospital during the pandemic’s initial stages.
“It was our first big trip out of the house during COVID-19,” said Kerry, noting that the timing was strange and a bit frightening.
“That was my first time being in the hospital overnight, too,” Bailey added.
They took Dr. Bass’s advice and came in for treatment, trusting that their team at Children’s Mercy would be able to help them deal with this setback.
“It’s a frustrating disease to live with,” said Dr. Bass. “Even with the best medications and doing everything right, there are still times when it flares up, and you have to try different treatments.”
Dr. Maddux says Crohn’s forces patients and families to constantly reframe their perspectives. “We have to shift from ‘this is a loss,’ to ‘this is something we can overcome,’” she said. “Instead of focusing on the disability, we put the focus on wellness.”
New focus: No prob llama
Bailey agrees and puts it simply: “When you can’t do what you want to do, you find something else you can do.”
In the hospital, that thing they could do was weave friendship bracelets. She and Kerry worked with a new loom to pass the time. They also explored origami, but that didn’t go as well, they laughed.
“Our origami was so bad,” Bailey giggled. “But we tried.”
The staff worked hard to keep Bailey’s spirits up. Llamas were trending while Bailey was in the hospital, so the staff started drawing llamas on Bailey’s treatment calendars and wore llama socks when she was finally ready to leave inpatient treatment. Kerry appreciated the team’s balance of humor and straight talk.
“Everybody was always very honest about the situation we were in,” Kerry said. “They didn’t sugarcoat anything, but they put the options in front of us—the plan if they worked, and the plan if they didn’t.”
A new treatment
To help stabilize Bailey’s symptoms, Dr. Bass recommended IV steroids in the hospital plus a switch from her oral medication to a biologic infusion taken through an IV every four weeks. In the beginning, the process takes several hours, as patients are closely monitored to make sure there are no adverse reactions. Bailey took these changes in stride.
“It was pretty easy,” Bailey said. “They would stick the IV in, and you would just sit there and watch movies and eat. You could order whatever you wanted from the cafeteria, and they draw the labs right there.”
Even wanting to order from the cafeteria was a good sign that Bailey was improving. Because her school was on a virtual schedule at the time, Bailey was also able to attend some Zoom classes during infusions to stay on top of her schoolwork. After she tolerated the initial infusion sessions well, Bailey was able to advance to “rapid protocol,” where the infusions are delivered more quickly.
“Bailey has always been pretty tough in terms of being able to handle whatever comes,” said Kerry.
“I’m fine with needles. I’m fine with blood. I just don’t want to see it,” laughed Bailey.
“Her positive attitude is just fantastic,” said Dr. Bass, “and it’s helping take care of her. Her family is so proactive with communication. They regularly update us on the portal, which helps us stay on top of her disease management. That positivity and proactivity helps them manage Bailey’s Crohn’s as best as they can.”
Life with Crohn’s
Dr. Maddux agrees. “With Bailey, it all goes back to her attitude and her resilience,” she said. “Bailey is a perfect example of how resilience can ultimately help patients be successful and overcome this disease, instead of succumbing to it.”
And Bailey relies on that hard-fought resilience: The unpredictability of Crohn's can make school days a challenge for Bailey and other kids with IBD.
“We’ve been fortunate that our teachers have been super supportive,” Kerry reported.
When she was in the hospital in 2020, Bailey’s teachers sent gifts, books, recordings and other encouragements. Now that Bailey is back to in-person attendance, their help is practical and formalized.
“I have a 504 plan that says I can go to the bathroom anytime, and I have preferential seating to be near a door,” Bailey explained. “The plan also has things in there like having extended time to make assignments up if I get sick.”
Taking advantage of those permissions can be its own challenge.
“I don’t like interrupting teachers, so I’d be scared to just go...even if I knew it’s fine,” Bailey said. “And I have some anxiety about knowing where the closest bathroom is.”
“Dr. Maddux helped with making plans and dealing with the anxiety that goes along with the physical symptoms,” Kerry said.
Dr. Maddux said that she helps Bailey and other patients identify the sources of their anxiety, then brainstorm practical solutions. She also helps challenge persistent fears by examining the real-life evidence for and against specific fears and worries. “In Bailey’s case, a large focus was on identifying her specific fears in the school setting and then identifying accommodations that she would likely need in the school environment,” said Dr. Maddux.
With Bailey’s symptoms under control, she’s been able to embrace high school life. She plays clarinet in the marching band; its outside practices and performances are possible now that she’s healthy and in remission.
“If I was at the point I was in 2020, I wouldn’t have been comfortable doing it,” Bailey said. “I would have wanted to, but I wouldn’t have been able to.”
She's also a fierce competitor on her high school’s bowling team. “I’ve been bowling forever,” Bailey said. “My dad is really into bowling, so he taught my brother and me when we were really young...It’s my main hobby!”
Dr. Bass loves to see Bailey’s enthusiasm, especially when she’s had to work so hard to enjoy doing what she loves.
“It’s so fun to get to know the patients and their families,” said Dr. Bass. “I get to follow them for a long time and witness their lives outside of their disease. I get to see that their disease does not define them.”
That respect is mutual. “I cannot sing her praises enough,” Kerry said of Dr. Bass. “She’s always so quick to reply on the portal with feedback and answers to specific questions. She’s always touching base with us and giving us guidance.”
Recently Bailey’s body stopped responding to the infusions, which can happen over time to some patients as the immune system develops antibodies to the biologic medication. Dr. Bass had Bailey start a weekly injectable version of the biologic instead.
“I do it myself, but I get all stressed out,” laughed Bailey. “I’m not afraid of needles when someone else does it. But when I’m the one doing it, I’m just here, like, trying to give myself a shot!”
She worked with Dr. Maddux again to develop coping strategies for her new treatment and is adapting well to the new medication.
“We know there are some other options out there, but our fingers are crossed that we can hold on to this one as long as we can,” Kerry said. “We’re hopeful that when Bailey is my age, maybe there will be something less invasive than shots or infusions available.”
They have hope for an easier future, but they also know that Bailey will be able to deal with whatever Crohn’s throws at her in the future. She’s learned to grow, adapt and practice optimism, and she encourages new Crohn’s patients to do the same.
“I know that it’s a cliché thing to say, but I think that if you look on the positive side while you’re going through hard times, it really helps,” Bailey said. “Look on the positive side, know you’ll get through it, and it won’t be forever.”
“And talk to your doctors,” Bailey continued. “Talk about whatever you’re going through, and they’ll be supportive. They’re always here to cheer you up.”
Crohn's disease: Leah's story
Leah Steinacker was a busy, active high school senior when sudden, severe stomach pain landed her in the hospital at Children’s Mercy. Her experience receiving care for Crohn's disease inspired her Master's thesis project - a waiting room kit for kids.
Medical Director, Inflammatory Bowel Disease Program; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Assistant Professor of Pediatrics, University of Kansas School of Medicine
Director, Gastroenterology Medical Transition; Child Psychologist; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine