Crohn’s Disease: Titus’ Story

Titus started to show signs of sickness in the fall of 2015. He wasn’t eating well and was making frequent trips to the bathroom, leading him to rapidly lose weight. Titus also looked pale and was exhausted every afternoon when he got home from school. His parents, Maygan and Daniel, took him to his pediatrician and then to a series of specialists to figure out the problem, but came up with no helpful diagnosis or treatment.

In November of that year, Titus also started losing patches of hair, but his doctor thought it was because of stress. It was clear to Maygan and Daniel that Titus was getting sicker, but the medical guidance they were receiving wasn’t working. They made an appointment with a specialist in the Division of Gastroenterology, Hepatology and Nutrition (GI) at CHOP.

Before the time came for the appointment, Titus’ health reached a crisis. On Christmas morning as he began to open his presents, he began to have excruciating pain in his abdomen. “He was going to the bathroom and screaming,” Maygan says. Maygan and Daniel took him to the Emergency Department at CHOP.

Discovering the cause

“The doctors at CHOP told us they were pretty sure that it was inflammatory bowel disease (IBD) and probably Crohn’s disease,” remembers Maygan. Blood tests showed signs of inflammation. Doctors also discovered that Titus had bloody diarrhea, which he was hiding from his parents.

Lindsey G. Albenberg, DO, took charge of Titus’ care. Dr. Albenberg is an Attending Physician in the GI Division and a member of the research team in the Center for Pediatric Inflammatory Bowel Disease at CHOP. She ordered tests, including a colonoscopy, an endoscopy and a biopsy of intestinal tissue. The scopes showed inflammation in Titus’ colon, and the biopsy confirmed the diagnosis of Crohn’s disease.

It was a tough diagnosis, but the family appreciated the way the news was delivered. “They were amazing,” Maygan says. “They were so helpful, so informative. They even had a child life specialist who worked with Titus to explain it to him with graphics. They had pictures for him to color in.”

Treating IBD is complex, as there is no one definitive treatment for all patients. Titus stayed at CHOP for a week and was given an infusion of Remicade®, a biologic medication used to treat Crohn’s disease. Medication can be an effective treatment for Crohn’s by targeting substances in the immune system that contribute to inflammation and symptoms. Titus immediately started to feel better, and was able to return home within a week. When he came home, his appetite returned, and he craved foods he used to have difficulty eating.

“when we first went to chop, titus was super small. i could wrap my hand around his arm and my fingers touched. after treatment, he got his appetite back. it was amazing to watch him eat again. it had been such a struggle to get him to eat before. when we got home, he started eating me out of house and home — like a teenager.”

Titus gained 20 pounds in the year after his treatment, and by the time he turned 8, he was in the middle of the height curve for his age. He also regained his energy, “to the point where he’s gotten in trouble at school for being too energetic,” Maygan jokes.

Dreaming big

Titus receives periodic infusions of the medication, and so far he continues to respond well to this treatment approach.

A thoughtful child (Maygan describes him as “an old soul”), Titus also had an emotional reaction to realizing he had a lifelong disease. He copes by engaging in efforts to find a cure for Crohn’s disease. For a school assignment, he wrote (in his own spelling):

I Have a Dream Just like MLK.

I have a dream that I could rase monye to cure chrones disease. It’s my dream because I don’t like it. Even other kids mite not like it to. And I’m the kid who will help cure chrones disease. If help of other peopel I can acmpesh that gole. One day, I hope that I can cure chrones disease.

Titus talks openly about the disease with his friends and enlisted them to join him last year in a local Take Steps for Crohn’s & Colitis Walk. Sharing his experiences makes him feel better, and he’s looking forward to attending Camp Oasis this year, a week-long summer program for kids with IBD.

In the meantime, Titus and his parents continue their efforts to support research into finding a cure for Crohn’s disease and are looking forward to accomplishing his dream.