When Jessica Grossman was eight years old, she started having painful stomach aches. “I wouldn’t eat dessert after dinner, and my mom thought that was weird,” says Grossman, now 19. One day, she stepped on a scale, and noticed she’d lost five pounds. It was scary, she says, because “eight-year-olds don’t lose weight.” After a series of doctor visits and “really horrible tests” including a barium enema, Grossman got a diagnosis: she had Crohn’s disease. “My parents were really scared,” she says.
In Canada, about 200,000 people suffer from Crohn’s or ulcerative colitis (together called inflammatory bowel disease, or IBD), giving our country one of the highest rates in the world. IBD causes inflammation and bleeding of the digestive system; while Crohn’s can affect any part of the gastrointestinal tract, colitis restricts itself to the large bowel. Symptoms include pain, fatigue and diarrhea. There’s no known cause, and no cure; both conditions are chronic and can be debilitating.
A few years after her diagnosis, Grossman got the stomach flu. This would be fairly normal for most 11-year-olds, but in her case, it was dire. The flu triggered her Crohn’s, and Grossman spent the next two years in and out of hospital. “I’m Jewish, and it was around the time of bar mitzvahs,” she recalls. “I missed most of them, which was really sad.” When drugs failed to help her, the doctors “ran out of ideas,” she says. They surgically removed her colon and some of her intestine. She now has an ileostomy, an opening in her small bowel, and wears an external pouch. “Getting used to a new body function was really hard,” says Grossman, a university student and volunteer speaker for the Crohn’s and Colitis Foundation.
Last month, a global initiative was launched that’s expected to bring major breakthroughs in our understanding of human health, including diseases like Crohn’s and colitis. For the first time, scientists are attempting to take a giant census of the trillions of bacteria that live in and on the human body, which are almost certainly implicated in IBD. The human microbiome, as it’s called, has been completely uncharted, until now.
“Where we expect this project to make the biggest difference, the soonest, is IBD,” says Robert Karp of the U.S. National Institute of Diabetes and Digestive and Kidney Diseases.