Teen Diagnosed with Crohn’s Disease Finds Relief and Support

Jaivan Morales-Smith was a typical teenage boy. At 5’9, the 15-year-old seemed to be growing like a weed. With his new height, Jaivan’s mother Jennifer noticed he was also getting thinner and encouraged him to eat more. It wasn’t until Jaivan lifted his arm one day, raising his baggy shirt, that she saw the extent of his weight loss.

“I was shocked. He was bone thin and had been hiding his weight so well,” recalls Jennifer. “I made him an appointment with his doctor right away.”

Jaivan met with Kevin Turner, MD, his pediatrician at UH Rainbow Lorain Pediatrics. At the appointment, Jaivan slowly began sharing what he had been dealing with in private. He suffered with persistent diarrhea, fatigue and abdominal pain. He had also developed painful sores on his bottom that made normal activities uncomfortable. Over a short period of time, Jaivan had lost 60 pounds. He weighed just 96 pounds.

Close Coordination and Rapid Diagnosis

Extremely concerned, Dr. Turner ordered blood and stool tests. He also scheduled an appointment for Jaivan with UH Rainbow pediatric gastrointestinal specialist Sharon Perry, CNP, for the very next day.

“Jaivan’s lab results showed his condition was severe. He was anemic and had high inflammatory markers. He had been losing substantial fluids and nutrients through loose bowel movements and had blood in his stool,” explains Perry. “Although his symptoms were extreme, it’s common for kids to keep issues like this from their parents. At first it may be embarrassing or they think it will just go away on its own. Once it gets too far down the line, it’s difficult to open up.”

Perry suspected Jaivan had Crohn’s disease, a form of inflammatory bowel disease (IBD) that causes inflammation throughout the gastrointestinal tract. The disease, which has no cure but can be successfully managed, is often diagnosed during the teen years.

To confirm the diagnosis, Perry immediately scheduled a gastrointestinal endoscopy and colonoscopy to examine Jaivan’s entire gastrointestinal tract. As predicted, the procedure showed extensive inflammation. In fact, his intestines were so inflamed and narrowed, they were unable to complete the test at the time. Jaivan also had intestinal ulcers as well as perianal fistulas – painful, small tunnels that develop in the anal region as a result of infection. Jaivan was diagnosed with Crohn’s disease and admitted to the hospital for treatment.

Personalized Treatment and Support

While in the hospital, Jaivan began antibiotic medication to help clear his infections and stabilize his condition. He underwent surgery to drain and treat the fistulas. He also started oral nutrition supplements to help support his body and regain weight. After a few days, Jaivan was able to begin a new biologic medication, given intravenously, to help put his disease into remission.

“I was so scared – everything happened so fast. We have no Crohn’s disease in the family, no reason to suspect something may be wrong,” says Jennifer. “I’m so thankful for Jaivan’s care. The people at UH Rainbow Babies were amazing.”

After nine days in the hospital, Jaivan’s condition was stable enough to go home. He continued to see Perry regularly for follow-up care and went to the hospital’s infusion center every six to eight weeks for his IV medication.

To help support children like Jaivan, UH Rainbow Babies & Children’s Hospital holds an IBD Clinic every other month. This multidisciplinary clinic allows IBD patients to meet one-on-one with pediatric dieticians, social workers, pharmacists and patient educators.

“Our IBD clinics are tailored to the individual needs of each patient. We want them to grow up understanding their disease and knowing how to manage their health independently,” explains Perry. “These clinics focus on issues such as learning healthy eating habits, understanding medications, knowing what symptoms to watch for, and how to make appointments with their provider. This makes the eventual transition to adult care so much easier.”

Living Well Despite Disease

Today, nearly one year since his diagnosis, Jaivan has gained back all his weight. His Crohn’s disease is now manageable and, according to his mom, he is back to his old self.

“Despite the pain he was in, Jaivan never missed a day of school and never complained when I asked him to do chores. Feeling bad had just become his new normal,” recalls Jennifer. “It’s amazing how full of life and energy he is now. He’s back playing basketball with friends and living a normal life. I’m hoping our story can raise awareness and encourage others to ask for help.”

Perry adds, “Jaivan is one of the most amazing kids I’ve ever met. It’s so gratifying to help him feel good, be a normal teen and do the things he loves. Crohn’s disease does not define him.”

Related Links

The University Hospitals Rainbow Pediatric Inflammatory Bowel Disease Center is the first of its kind in the region, where children and adolescents with inflammatory bowel disease (IBD) can receive the most advanced care possible.