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As an 11-year-old fifth grader, Lottie Staggs noticed a troublesome difference between herself and her friends.
"They were more active," she recalls, "and I was spending a lot of time finding the bathroom."
Puzzled by Lottie's onset of stomach pain and diarrhea, her parents took her to Ottumwa, Iowa, pediatrician Debra Miller, MD.
"At first the illness seemed like a parasite or infection," says Lottie's mother, Jody. "It soon became obvious that something more serious was wrong so Lottie was referred to University of Iowa Children's Hospital in Iowa City."
During an initial visit, Lottie was evaluated by pediatric gastroenterologist Warren Bishop, MD. Bishop is one of Iowa's only pediatric gastroenterologists—doctors who train first as pediatricians and then undergo three years of additional training in the care of children's digestive systems.
A colonoscopy and liver biopsy confirmed that Lottie's digestive tract was highly inflamed.
"Intestinal disorders such as irritable bowel syndrome, Crohn's disease, and ulcerative colitis can be difficult to diagnose because the symptoms are very similar," Bishop explains. "Lottie had deep ulcers throughout the colon, one of the indicators for Crohn's. Another factor, which confirmed the diagnosis, was that she had normal, healthy bowel between sections of diseased bowel."
The Crohn's disease diagnosis was unexpected—even though Jody had been diagnosed with a mild case of the disease in her 20s.
"Crohn's wasn't on our radar," Jody says. "I had no idea the condition was possibly genetic. With her age and everything, we didn't think about it."
Treatment started immediately and, although she showed substantial improvement, it took a couple of years to find the best fit (Remicade®). Along the way, Lottie was hospitalized twice from allergic reactions to medications. She also was diagnosed with autoimmune hepatitis—a potentially serious but treatable disease found among some patients with Crohn's.
"At first I thought I was going to die or be ill for a long, long time," Lottie says. "But after the diagnosis the doctors and nurses explained things and made me feel more at ease."
Recently, Dr. Bishop prescribed a different medication, Humira®, which is similar to Remicade but not FDA approved for patients under age 18.
"Now that Lottie is approaching that age," Bishop says, "she qualifies and will find it more convenient to use during her college years."
Humira can be self-injected every two weeks wheras Remicade required five- to six-hour hospital visits every 10 weeks for intravenous care. Both medications have greatly diminished Lottie's Crohn's-related flare-ups.
Jody says Crohn's has forced her daughter to mature faster than other kids her age. "It was embarrassing to have to tell her teachers, but necessary, because they need to understand if she has to get up and leave class immediately," Jody says. "Crohn's is manageable and liveable. My advice to people who have it, ‘Don't give up hope!' There's a lot of good help out there."
For more information, patients and families should call 888-573-5437 and ask for the Division of Pediatric Gastroenterology at UI Children's Hospital, or call the division at 319-356-2950.
—Michael Sondergard
Crohn's up close
Common symptoms
- Abdominal pain
- Diarrhea
- Rectal bleeding
- Weight loss
- Arthritis
- Skin problems
- Sometimes fever
Online resources
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