After months of stomach cramping that left her crying in pain, Katie Tricarichi, saw a doctor. She had a colonoscopy on her 16th birthday. Two days later, she got the diagnosis -- Crohn's disease.
Crohn's disease is an inflammatory bowel disease (IBD) that causes diarrhea, cramping, and loss of appetite. In severe cases, it can lead to malnutrition. Crohn's can affect any part of the digestive tract, but it often affects the small intestines or colon.
Tricarichi's treatment started with a number of medications that she took for four years. "Then I developed a fistula [an abnormal connection] between my bladder and my ileum," she says. "The fistula went undiagnosed for almost six months. By the time it was found, I needed emergency surgery."
The surgery involved a small bowel resection. Surgeons removed 12 inches of her small intestine and the first inch and a half of her colon. They also took out part of her bladder and repaired a hole on the top of her uterus.
For Tricarichi, who is now the walk director of the Crohn's and Colitis Foundation of America, the surgery for Crohn's changed her life.
"It gave me six blissful, almost Crohn's-free years before I had an active flare," she says.
Eight years later, Tricarichi takes similar medications to the ones she was on when she was first diagnosed. About her surgery, she has no regrets.
"I do believe Crohn's surgery should only be used when medication fails, but it was definitely the best decision for me," she says. "The surgery saved my life."
Tricarichi's story mirrors that of many people with Crohn's disease. Many have surgery only for an emergency or when other treatments fail. Almost 3 out of 4 people with Crohn's will need some kind of surgery eventually. Most get relief from symptoms for a while, and some can go off a few or all of their medications, at least temporarily.
"Surgery gets rid of the diseased bowel," says colorectal surgeon Jon Vogel, MD, of the Cleveland Clinic. Vogel says surgery can help people eat and drink without pain. It also frequently eliminates the need for ongoing medications. "For all these reasons, surgery for Crohn's improves quality of life," he says.
At the same time, medications for IBD are also getting better, with the development of biologics and other drugs that suppress an overactive immune system. "Crohn's disease medications improve quality of life for some people," Talamini says.
People considering Crohn's surgery should be cautiously optimistic, however.
"Surgery doesn't cure Crohn's disease," says Mark Talamini, MD. Talamini is chairman of surgery at The University of California, San Diego. Half of people who have one surgery require a second procedure or more. Tricarichi is a prime example. Her Crohn's disease is no longer in remission, and she may need additional surgery down the road.