Ulcerative Colitis: William’s Story

As a baby, William had problems digesting food. His mother, Sherri, and his father, also named William, worked with his pediatrician to find a formula he could handle. His eating problems continued into early childhood, and William was found to be allergic to many foods.

When he was 4, William started to complain of stomach pains and to have frequent incidents of projectile vomiting. His pediatrician referred him to a gastroenterologist who diagnosed him with reflux and started him on medication.

That helped for a while, but a year later the stomach pains were back, this time with worsening bouts of diarrhea.

“Within a few weeks, his stool went from loose to runny, then to a little bloody, and then to mostly bloody within a few weeks,” says Sherri. “It was a terrible thing to see him doubled over in pain without knowing what was going on.”

Finding answers at CHOP

William’s GI specialist did a colonoscopy and endoscopy and found extensive inflammation in his colon. “He told me that 98 percent of his colon was inflamed,” remembers Sherri. He suggested that they bring him to Children’s Hospital of Philadelphia (CHOP).

At CHOP, William underwent an array of tests, including another endoscopy and colonoscopy and allergy screenings. Doctors diagnosed him with inflammatory bowel disease (IBD), and explained the condition to William and his parents. There are two types of IBD — ulcerative colitis and Crohn’s disease — both chronic conditions that affect the gastrointestinal (GI) tract. Because the inflammation was confined to William’s colon, he was determined to have ulcerative colitis.

“They explained everything down to the letter.”

The medical team started William on a combination of anti-inflammatory, antacid and probiotic medications and put him on a nasogastric (NG) feeding tube to supplement his nutrition.

Over the next year, while he was in kindergarten, William continued to have regular bouts of bloody diarrhea. Episodes with bad stomach cramps and very bloody diarrhea required hospitalization. Dehydration was a concern, and he started to lose weight. He became very lethargic. Doctors continued to revise his treatment plan to find the best solution.

Treating IBD can be challenging and complicated. Patients are affected in very different ways — it can be serious for some patients, but milder for others. Depending on the individual, IBD can also sometimes affect other parts of the body. There is no one set drug, treatment or combination of treatments to manage symptoms for patients, so it can take various lengths of time to test and discover the most effective treatment.

Managing IBD with medication and nutrition

Under the care of Robert N. Baldassano, MD, a pediatric gastroenterologist and Director of the Center for Pediatric Inflammatory Bowel Disease, William’s medication was changed to Remicade®, a biologic immune suppressant administered in periodic infusions. He also took William off all solid foods so that his nutritional intake could be carefully controlled through a feeding tube.

The combination of medicine and nutrition management worked to bring down the inflammation in William’s colon. It also restored his energy.

“He would run around like a crazy person.”

Channeling his energy

William was feeling great and had the energy to be active again, so Sherri enrolled him in a gymnastics program. At the end of William’s first session, his coach wanted William to be on the gymnastics team he led. That was the start of what has become a great passion. Now 13, William practices gymnastics for 16 to 20 hours a week, and has refined his skills in all of the competitive events: floor, rings, vault, pommel horse and high bar. William recently won the statewide gymnastics competition for New Jersey. Next year, he hopes to compete at the national level.

William returns to CHOP every eight weeks for Remicade infusions, and every six months for follow-up with the medical team. He receives care at CHOP’s Specialty Care Center in Princeton, New Jersey.

“He’s such a good kid,” says Sherri. “He’s so strong. He never complains.”

Sherri has high praise for the medical team at CHOP, too. “They make William feel like a superstar. Everybody there genuinely cares about your child’s wellbeing. They’re constantly asking what else they can do.”