Crohn’s Disease: Emily’s Story

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Emily, 13, has a passion for acting. During the school year, she appears in plays and musicals at the Main Stage Center for the Performing Arts. In the summer, she goes to Summer Stage. Emily always takes a break from acting for one week during the summer, though, to attend Camp Oasis, where both campers and counselors are dealing with inflammatory bowel disease (IBD). When she’s older, she hopes to become a counselor there.

Emily IBD patient outside smiling at boathouse row Emily’s health problems began when she was 8 years old. She had constant stomach pains, which got worse after meals, and she had to make frequent trips to the bathroom. Emily made a visit to the local emergency room and was told that she was suffering from constipation. She also lost a lot of weight. Her pediatrician suggested that she see a specialist in the Division of Gastroenterology, Hepatology and Nutrition (GI) at Children’s Hospital of Philadelphia (CHOP).

Emily came under the care of Ritu Verma, MBChB, a pediatric gastroenterologist who is Director of the Center for Celiac Disease and the Lustgarten Endowed Chair for Clinical Care of GI Motility Disorder. From the symptoms, Dr. Verma could tell that that Emily had some type of IBD. After a series of tests including an endoscopy, colonoscopy, MRI and X-rays, Dr. Verma was able to refine the diagnosis — Emily had Crohn’s disease, a form of IBD.

Managing Crohn’s

While Crohn’s disease doesn’t yet have a definitive cure, treatments are available to help manage its symptoms. Crohn’s impacts patients in various ways, so the most effective treatment may be different for each individual.

As a first step, Emily was given a special formulation of nutrients through a nasogastric feeding tube (NG tube). The tube passed to her stomach through her nose, and was taped to her face. After a month, Emily wasn’t feeling any better, and she was having difficulty adjusting emotionally.

Dr. Verma, in consultation with her parents, decided to try a different approach. She prescribed Methotrexate, one of a class of medications called immunomodulators. Methotrexate decreases the inflammation by affecting the activity of the immune system and can help patients with Crohn’s disease. By reducing the autoimmune response that causes inflammation, the intestines tend to heal.

That was a big decision for the family, as the drug can have some serious side effects. It was also an adjustment for Emily to get used to taking injections once a week, besides the pills that she was already on. Emily did respond initially, but then started having reactions at the site of the injection and became fearful of them. The medication also wasn’t totally helping her. At that point, after significant discussions, she was changed to a different immunomodulator — 6 Mercaptopurine.

Emily responded well to the new treatment. She still had some tough days that caused her to miss school or weekend activities, but she felt better most of the time. Emily was closely monitored for side effects from the medication, but she wasn’t experiencing anything serious.

Treatment was helping Emily regain her energy, and she was able to play basketball, dance and get back to performing on the stage. With the support of the school and her teachers, she was able to keep up with her classes on the days she couldn’t attend.

While Emily was improving physically, her doctors wanted to make sure she was coping emotionally as well. Between having a chronic condition and missing school periodically, children with IBD can sometimes experience feelings of isolation.

Emily was encouraged to attend Camp Oasis, which runs for a week every summer. She attended for the first time when she was 9 and hasn’t missed a session since. Attendees have fun together, as kids do at any camp, but the camp’s real value is in providing an open environment for young people to discuss their feelings while managing their IBD. Psychologists are also available at CHOP to help patients cope emotionally to conditions and introduce stress reduction and relaxation techniques.

Emily’s breakthrough

At age 12, Emily had a relapse and her intense symptoms returned. She was missing eight or nine days of school each month as a result. Dr. Verma changed Emily’s medication from 6 Mercaptopurine to Remicade®, a biologic immune suppressant. The treatment has proved to be very effective for Emily, and this is still how she manages her Crohn’s today.

Now 13, Emily goes to CHOP every six weeks for the infusions. She still misses school occasionally because of her condition, but it’s down to only one or two days a month. She’s a good student, and her teachers continue to support her when she misses classes.

Emily’s a happy teenager, and she doesn’t let the disease define her. She has the energy and self-discipline to excel in school and make time for rehearsals and performances at Main Stage several nights each week. In fact, performing energizes her.

It's been life-changing for us to have chop so close. what they've done for emily is amazing. no matter what comes up, they find a solution.” — jim, emily's father. 

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