Crohn’s Disease: Jillian’s Story

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When Jillian was 12, it was clear something was wrong: During the past year, she had lost more than 10 pounds. Standing 4’5”, she weighed only 56 pounds. Her eventual diagnosis of Crohn’s disease, a type of inflammatory bowel disease (IBD), fit in with her extended family’s history of autoimmune disorders. Medications have her symptoms under control, and in addition, meals at her house have become healthier.

Jillian Jillian’s pediatrician, upon seeing the girl’s weight loss, wondered if the cause was bulimia or anorexia. Then Jillian’s symptoms worsened to include, among other problems, blood in her stool.

Her mother, Elise, took her to Children’s Hospital of Philadelphia’s Specialty Care Center in Princeton at Plainsboro. After Jillian received the Crohn’s disease diagnosis in January 2015, she and her family scheduled an appointment with Andrew Grossman, MD, Co-director of CHOP’s Center for Pediatric Inflammatory Bowel Disease. “He knows of most recent treatments,” says Elise of Grossman, who has cared for Jillian ever since.

To control her symptoms, Jillian receives infusions of Remicade every five weeks. The treatment is a huge advance from what her uncle underwent for his inflammatory bowel disease: He needed to have multiple surgeries and took steroids. Elise could clearly see the positive effects of the Remicade on her daughter. “I would take photos at every treatment, and you could see a big difference because her body was finally absorbing nutrients,” says Elise.

A second diagnosis

A year and a half after the IBD diagnosis, a liver biopsy revealed that Jillian had autoimmune hepatitis, a disease in which the immune system attacks the liver and causes inflammation and damage. For this, she now also takes a daily dose of an immunosuppressant. An MRI showed inflammation in her back, which could indicate rheumatoid arthritis, but that would be treated using the medications she’s already taking.

Through it all, Jillian has continued her passion: She’s been a competitive dancer since she was a little girl, and her favorite style is tap dancing. She’s had to cut back somewhat on her dance classes, but she’s still competing. Now 15, she’s thinking about her future career and considering becoming a nurse.

A thoughtful diet

Jillian smiling One result of Jillian’s condition is that the entire family is more deliberate in their food choices. “We have made changes to our diet at home,” says Elise. “We’re more conscious about only buying organic fruits and vegetables, wild-caught fish and organic hormone-free meats.”

When Jillian isn’t at home, she’s a little less strict about her diet. “We want her to be able to go to a party and eat things,” explains Elise.

The careful dietary choices aren’t a burden on the family. “We follow what’s best for her,” says Elise, “but it’s probably best for all of us.”

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