Crohn’s Disease: Jackson’s Story

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Jackson, 15, loves to be on stage — acting, singing and dancing. He’s pursuing his passions at a selective regional high school for the performing arts. Thanks to effective treatment for his Crohn’s disease, Jackson is able to perform with his full energy.

Crohn's disease patient, Jackson When Jackson was 3, he developed an abscess on his bottom, a swollen ball with a fluid center. His mother, Christine, took him to the pediatrician, who referred her to Children’s Hospital of Philadelphia (CHOP). Michael Nance, MD, lanced and drained the abscess.

The abscess went away for a while after treatment, but then it came back. And Jackson started having pain whenever he had a bowel movement. “Tremendous pain,” Christine remembers. “He would scream. I had to hug him while he was on the toilet and put him in the bathtub before and after as a way to soothe him. He was afraid to go far from the house in case he needed to go to the bathroom. He didn’t want other people to hear him scream in a public restroom.”

Signs of inflammatory bowel disease

Christine brought Jackson back to CHOP, where his medical team expanded as doctors worked to diagnose his condition. The doctor he began to see most regularly was Petar Mamula, MD, an attending physician at the Center for Pediatric Inflammatory Bowel Disease (IBD) and Director of the Kohl's GI Nutrition and Diagnostic Center.

“Dr. Mamula was wonderful with us,” says Christine. “He has a gentleness to him. He won Jackson over on the first visit by making him an origami elephant.”

Dr. Mamula suspected that Jackson had a form of inflammatory bowel disease (IBD), a condition in which a person’s immune system attacks healthy tissue in the digestive system, causing inflammation. Over time, the inflammation can damage the tissue, causing scarring and constriction that slows or even blocks digestion. Both the abscess and the pains when having a bowel movement fit with a case of IBD affecting Jackson’s bowel and rectum.

Indications of inflammation can be detected in blood samples, but a firm diagnosis can only be made by analyzing tissue samples (biopsies) taken as part of an endoscopy or colonoscopy. Dr. Mamula did these tests more than once, but did not find the telltale signs of IBD in the tissue samples. Because IBD can affect different sections of the digestive system in different patients, the disease can be missed in these biopsies. One section of the intestine or bowel may have inflammation while another section, inches away, is not affected.

Jackson was ultimately diagnosed with Crohn’s disease. Jackson was put on a combination of oral medications and a rectal foam. After a few weeks, these eased his discomfort when using the toilet. He still had problems at times, including mild constipation caused by a constricted section of his bowel (a “stricture”), but he was no longer screaming in pain every time he went to the bathroom.

Treatment adjustments

A year later, when Jackson was 5, Dr. Mamula reviewed the medications he had been taking and the continuing difficulties he was having, and moved Jackson to a more powerful combination of medications. Dr. Nance began to treat the constricted section of Jackson’s bowel (the stricture) with a periodic non-surgical stretching procedure, which had to be repeated every few months.

Jackson started kindergarten that fall and was able to attend without significant accommodation. He had special permission to use the bathroom without having to wait for the teacher’s approval.

When Jackson was 7, Dr. Mamula put him on a more powerful biologic medication administered in infusions at CHOP every few weeks.

“He’s in his glory”

Jackson At 15, Jackson is doing well. He comes to CHOP every five weeks for infusions. He has a passion for theater — acting, singing and dancing. From a young age, he performed in productions of a local community theater. He now attends a regional performing arts high school.

“He’s in his glory,” says Christine. He does well in school and is honing his acting skills with a small group of talented kids who share his love for the stage. He has a close-knit group of friends from school and from his work in community theater. “He’s a very caring kid,” Christine adds. “A sweet kid. And a bit of a comedian.”

Looking back on his struggles with Crohn’s disease through the years, Jackson himself sees one positive impact. “It’s given me a real appreciation for good health,” he says. “I’m not bothered by the minor things, like colds. I just love feeling good when I’m healthy. I notice it.” He’s happy to have the energy for the theater work he enjoys so much, and for the community that he has found in that work.

Christine is grateful for the care CHOP has provided to Jackson through the years.

They were willing to take him on and follow him closely even when we had no evidence that it was Crohn’s. They are accessible. The doctors call back when we have issues or questions, even on the weekends. And they see Jackson as a full person, not just a kid with this specific disease. CHOP feels like extended family to us.

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