Rainbow Program Helps Young Patient with Crohn’s Disease to Thrive

Jordan Nudelman was 14 years old when she developed severe stomach cramps and lost her appetite. The problem was constant. And because the high school freshman’s pain was unseen, those around her dismissed the problem. Worse, some experts thought she was making it up. It wasn’t until Jordan had lost 40 pounds from her small, 120-pound frame and collapsed from severe stomach cramps while playing in a golf tournament that she was brought to University Hospitals Rainbow Babies & Children’s Hospital.

“I was in pain all the time but no one believed me. I eventually stopped complaining,” Jordan says. “I even started to question myself.”

Finding Answers

After months of suffering, Jordan finally found the help she needed. After more than a week of evaluation and testing at UH Rainbow Babies & Children’s Hospital, Jordan was diagnosed with Crohn’s disease – a form of inflammatory bowel disease (IBD) that causes inflammation within the digestive tract.

“IBD is insidious because symptoms can lag behind the inflammation that is building on the inside. Because of this, the diagnosis can be delayed, especially in the pediatric population,” says pediatric gastroenterologist Jonathan Moses, MD, Director of the Center for Pediatric Inflammatory Bowel Disease at UH Rainbow Babies & Children’s Hospital. “IBD can affect people in different ways. For example, diarrhea is often a presenting symptom of IBD, but one that Jordan didn’t experience, making her diagnosis less obvious.”

Getting the right diagnosis and treatment is essential for children with IBD. Without it, the disease can lead to malnutrition, a need for surgery, and other complications. Some kids with IBD can also have overlapping anxiety and depression and have difficulty successfully participating in school or sports.

Specialized Care and Support

UH Rainbow Babies & Children’s Hospital has a specialized team of pediatric gastroenterology providers who understand the subtleties of IBD and can provide accurate diagnoses and second opinions. They also recently created the new center to provide whole-person care for pediatric patients through the specialized Pediatric IBD Health Maintenance Education and Transition Clinic. The Center for Pediatric Inflammatory Bowel Disease is comprehensive and the first of its kind in Northeast Ohio.

The pediatric IBD center brings together pediatric IBD specialists, including gastroenterologists and nurse practitioners, IBD nurse educators, clinic trial coordinator, dieticians, child life specialists, social workers and pharmacists who collaborate on the unique care of these young patients.

“This center is different from others in that we don’t just prescribe medications. We care for the whole person,” Dr. Moses says. “IBD affects so many aspects of life. There is no cure, but it can be successfully managed. With this program, we ensure the children and their families affected by IBD are equipped and supported to flourish despite the disease.”

In addition to regularly seeing their pediatric gastroenterologist, patients are seen in the Health Maintenance Education Clinic every one to two years. Specialists monitor growth, ensure medication treatment is effective, provide dietary therapies and supplements, screen for anxiety and depression, enroll patients in clinical trials and much more. At every meeting, IBD nurse educators help patients learn how to care for themselves as they grow into adulthood.

“IBD is a lot to manage and we want to prepare pediatric patients to eventually take ownership of their care when they become adults — from scheduling their own appointments to making good diet choices,” Dr. Moses says.

Successful Treatment

Jordan received her first IV infusion of medication for IBD while she was still in the hospital. Thankfully, it has effectively controlled her disease ever since and she is in remission. Now, at age 18 and in her first year of college, a nurse comes to Jordan’s dorm room every six weeks to give her the infusion treatment. She meets with UH Rainbow Babies & Children’s Hospital’s IBD center specialists yearly and sees Dr. Moses regularly to make sure her care is on track.

As a result of treatment, Jordan is now at a healthy weight, no longer experiences crippling pain and is feeling strong. She is able to avoid certain foods that trigger her inflammation and is overcoming her anxiety and depression. Jordan is also using her experience for good.

Thriving with IBD

“When I was in the hospital, I struggled with panic attacks and difficulties about my situation. My Child Life specialists were absolutely amazing and helped me through the stressful times. I want to use my experiences to help others,” says Jordan, who is currently studying to become a Child Life specialist herself.

Jordan is also working to make sure other children with the disease don’t feel alone. She has worked with Dr. Moses to raise awareness of the disease through the local chapter of the Crohn’s and Colitis Foundation. Jordan has also created online group chats to bring kids together and help answer their questions. Currently, kids throughout the country and as far away as South Africa are connecting due to Jordan’s work.

“Connecting with others who understand is truly the most amazing feeling and I want to share it,” Jordan says. “I am so thankful for Dr. Moses who has not only helped me manage my Crohn’s but find ways to reach others.”