Jessica said her case was rare because doctors had never found a granuloma in her tissues before. Others with Crohn's disease could have thousands of granulomas in afflicted tissue. She said that, because the tissue was from old biopsies, there may have been fewer granulomas to find and that there could be more now. While her Remicade treatments had worked well for many years, the past year had been her worst since 2002.
But experts say granulomas are not a definitive diagnosis for Crohn's disease. Sands pointed out that more than half of patients with Crohn's do not have granulomas.
Taking on her own illness for a high school science project was not an opportunity to play Nancy Drew and solve a medical mystery, Terry said. But the personal significance may have made her more vigilant in her research.
"Students need to pick a tissue that has meaning for their lives," said Mary Margaret Welch, dean of Academics at Eastside Catholic High School and Terry's biology teacher. "For Jessica, it's important for us to talk about the future, how could research maybe find some cures."
Research on gastrointestinal diseases has made advances in the past several years. Dr. Shanthi Sitaraman, associate professor of Medicine at the Emory University School of Medicine in Atlanta, described a number of new blood tests as well as a swallowable camera pill that could image the length of the gastrointestinal tract and make it easier to diagnose diseases like Crohn's earlier.
"Crohn's disease is very hard to diagnose compared to ulcerative colitis because it can affect any part of the bowel," Sitaraman said. "The bowel is eight-feet long and probes can only go in a few feet at either end. ... Ten years ago [when Terry was symptomatic], we didn't have camera pills or blood tests."
With a definitive diagnosis in hand and an effective treatment regime, Terry plans to head to college and nursing school. And as part of her science project, Terry wrote a children's book called "A Parent and Child's Guide to Cope With Crohn's Disease." Part diary, part resource guide, the book tells the story of Little Lilly, a girl with Crohn's disease, describing her emotions alongside scientific explanations of what the illness is and what it can do.
"Growing up the worst part for me was not knowing what to expect -- what to expect from tests, from medications that may or may not work," Terry said. "This book is a child and parent's way to cope with the disease and realize what's going on."