Crohn’s Disease: Kristen’s Story

One day in the summer between second and third grade, Kristen told her mother, Tina, that she didn’t feel well. Her stomach would become upset after eating, and she was going to the bathroom a lot. “I asked her how often she was going to the bathroom,” Tina remembers, “and she said ‘a lot a lot.’ So, I called her pediatrician.”

The pediatrician told Tina that it was probably a virus and that they should give it some time to clear up. Two days later, Kristen’s condition hadn’t changed. They returned to the pediatrician, but the doctor couldn’t figure out the problem. She asked Tina to collect stool samples for lab analysis.

But that night, Kristen’s condition grew worse — she was in a lot of pain and extremely weak. This time, her mom brought her to the emergency room at their local hospital in Abington, PA, where X-rays and an MRI were taken, and Kristen was admitted.

Discovering a diagnosis

Kristen’s condition continued to deteriorate, and over the next two days, she was rapidly losing weight. Unable to find the cause of the problem, her local doctors transferred her to Children’s Hospital of Philadelphia (CHOP) so that she could be evaluated by specialists. Kristen was placed in the care of Pediatric Gastroenterologists Petar Mamula, MD, and Andrew B. Grossman, MD, now the Co-director of CHOP's Center for Pediatric Inflammatory Bowel Disease (IBD).

The Center for Pediatric IBD is one of the largest of its kind in the U.S. Every year, about 1,400 children with IBD come from around the world to receive the latest IBD treatments and participate in clinical research studies. Familiar with cases like Kristen’s, the team quickly got to work to confirm the problem so that they could effectively provide treatment.

The doctors conducted a colonoscopy and endoscopy, which showed inflammation characteristic of IBD. Tissue sample (a biopsy) was taken for examination and the test found granulomas in Kristen’s intestine, which are microscopic collections of cells that form in response to an infection or inflammation.

Kristen was diagnosed with Crohn’s disease, a form of IBD. While Crohn’s disease does not yet have a definitive cure, symptoms can be treated. Managing Crohn’s disease is very complicated — patients experience different levels of symptoms and there’s no one drug or treatment that works for everyone. Patients also respond to treatments in different ways, so it can take time to discover the most effective treatment for each individual.

Kristen was put on a nasogastric (NG) feeding tube to boost her nutrition intake and started on a combination of anti-inflammatory medication and steroids. Nutritionists worked with Kristen’s family to develop a plan to avoid foods likely to trigger Kristen’s symptoms, and she was advised against eating foods difficult to digest like raw vegetables, nuts or popcorn.

Kristen responded quickly to the treatment. She began to feel better and gained 9 pounds within a few weeks.

Adjusting emotionally

Upon reflection, Kristen views the initial period after her diagnosis as the toughest. It took her time adjusting to what she thought of as her “new life” — one that revolved around medication and doctor’s appointments. The NG tube, which she used for about three years, was another challenge.

“Even though Crohn’s is an invisible disease, the tube was a visible reminder of my sickness,” says Kristen. “I never wanted to have my picture taken because I didn’t want the memories to reflect my disease.” However, she found that classmates at school made no issue of the nose tube, and a core group of friends helped her through the tough times.

Kristen also found support at Camp Oasis, a summer camp for children with IBD, staffed by counselors who have the disease themselves. “That was great because it let me see that there were other people who were experiencing what I was,” says Kristen. "I only knew one person who had Crohn’s before I went to Camp Oasis.” She returned for several years, and the experience later inspired her to start a Crohn’s support group at her high school.

Over time, Kristen continued to adjust to her new normal and adapt to changes in her treatment. In the fall of 2009, at the start of fifth grade, she had surgery to place a gastrostomy tube (or G-tube) directly in her stomach.

“Switching to the stomach tube was great,” she says. “It took away the very obvious nose tube and replaced it with what I called my ‘second belly button.’ It also made sports a bit easier because I didn’t have the nose tube swinging around.”

Kristen’s breakthrough

In the summer before her freshman year of high school, a flare-up of the inflammation prompted Kristen’s medical team at CHOP to change her medication to a biologic drug used to treat Crohn’s disease. The treatment involves periodic infusions at the Hospital and proved to be more effective at controlling her symptoms. A few months later, Kristen was able to have her G-tube removed.

“I love eating now. most people think because i'm so small that i don't, but i eat pretty much constantly. i especially love pasta, mac and cheese and waffles.”

With her disease under control, Kristen excelled. She ran cross-country and track all four years of high school, and was named captain of multiple teams her senior year. She graduated fourth in her class and now attends Temple University, where she is majoring in statistics. In her freshman year at Temple, she landed a role as one of the managers for the women’s basketball team, and travelled with the team to the NCAA Tournament — “an incredible honor,” she says, and one that she hopes to repeat next year.

Embracing Crohn’s with humor

After her early struggles to adjust to life with Crohn’s disease, Kristen has come to terms with her condition. She embraces her Crohn’s and does so with a sense of humor.

Kristen organized a “Crohniversary” party to mark the five-year anniversary of her diagnosis, and invited the good friends who had helped her through the early years. Kristen’s “Crohniversary” has since become a tradition, and the group celebrated the 10-year anniversary the summer after graduating from high school. For that event, Kristen went all out, even sending handmade invitations crafted to look like intestines.

Kristen is grateful for the care CHOP has provided and for the way they provided it.

“CHOP has been a very comfortable place for me,” she says. “It didn’t have that scary hospital vibe that most medical centers have. Everyone was so kind and friendly. The people there always took the time to make me feel at home.”