Ulcerative Colitis: Shea’s Story

Shea was 6 when she started showing signs of sickness. It started with occasional bouts of bloody diarrhea, and then she started getting stomach cramps. Shea started to look pale, acted lethargic and was losing weight.

“She did a lot of crying,” her mother, Miranda, remembers. “Sometimes I’d just sit and cry with her.” Her local pediatrician in Lehigh Valley, PA, couldn’t figure out the cause.

One day, Shea was feeling extremely weak. She didn’t even think she could make it down the steps without falling, so her parents took her to the emergency room at their local hospital. Shea was diagnosed with anemia and admitted for treatment with iron infusions. When her stomach pains and diarrhea continued, doctors performed a colonoscopy. The scope led to a diagnosis of ulcerative colitis.

Ulcerative colitis is a form of inflammatory bowel disease that affects the lining of the colon (large intestine) and rectum, causing inflammation and ulcers within the lining of the bowel. Symptoms of ulcerative colitis, like diarrhea and abdominal pain, often come and go, leading to periods of remission in between flares. While ulcerative colitis is chronic, treatment can help alleviate symptoms.

Managing her IBD

Shea started on a medication that reduces inflammation in the intestines in patients with IBD, along with steroids. Her stomach pain became more tolerable, and she was released from the hospital.

Even though they finally had a diagnosis and the medication seemed to be helping a little, Shea still wasn’t feeling well. Her parents found a doctor in New Jersey who specialized in caring for children with IBD and went to see him for a second opinion. He adjusted her medication by doubling her dosage.

“he also told us he knew some fantastic doctors at children's hospital of philadelphia (chop),” miranda remembers.

But at the time, it didn’t seem like they needed more help. The adjusted doses of medication appeared to have solved Shea’s problems. She was healthy for a year.

Unfortunately, Shea’s battle with her ulcerative colitis wasn’t over. Flare-ups sent her back to her local hospital twice. Her doctors in Lehigh Valley thought the medication was no longer effective, and they changed her medication to another drug for IBD that works by suppressing the body’s immune responses. She also remained on the steroids.

That worked fairly well for another year, until she had yet another flare-up. This time, her medical team had a harder time getting the inflammation under control. She went home with a peripherally inserted central catheter (PICC), which delivered the medicines directly into her bloodstream. Her steroid dose was increased again.

A turning point

“Our frustration was growing,” says Miranda. “Her face was swollen from the steroids. They were causing horrible mood swings and constant hunger. And she was developing a toxic reaction to her medication — it was starting to damage her liver.”

Shea’s family remembered the earlier suggestion from the specialist in New Jersey to try CHOP. They contacted Andrew B. Grossman, MD, a pediatric gastroenterologist and 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.

“They were amazing,” says Miranda. “Dr. Grossman’s nurse, Janine McDermott, got right back to me, and Dr. Grossman called soon after. He wanted to understand Shea’s condition.”

The family met with Dr. Grossman as well as other specialists who would be part of Shea’s medical team, including an endocrinologist and a nutritionist.

“they made everything as easy as possible for us.”

Shea was admitted to the hospital for additional tests — a colonoscopy and endoscopy — and for monitoring as the medical team tried a different approach to her treatment. The scope showed inflammation in Shea’s colon, as expected, but also discovered inflammation in her stomach, which Dr. Grossman thought to be the result of the steroids.

Shea’s breakthrough

The team’s recommendation was to wean her off the steroids and start infusions of a biologic medication for treatment of IBD. Shea also needed iron infusions.

Shea had her first infusion during that week-long stay at CHOP, and continues to come back for them every few weeks. “Within days she was feeling better,” says Miranda. “The bathroom trips were more normal, and she started to look and act like herself again. She’s so smiley, such a happy, funny kid. A goofball.”

Nine years old now, Shea has her energy back and is able to throw herself into the activities she loves. Shea enjoys art, especially drawing. She also likes school, particularly science, and enjoys time with her friends. But with all of her newfound energy, cheerleading is at the top of that list. “I like that I get to be loud,” she explains.

Dr. Grossman and the team continue to keep a close eye on her treatment regimen so that Shea’s inner cheerleader can stay strong and loud.