Inflammatory bowel disease in kids is on a curious rise

For 10-year-old Jacob Krause, getting ready for the new school year wasn’t a simple matter of back-to-school shopping. It also involved working out logistics for getting to the bathroom as many as 20 times during a single school day.

The Baltimore fifth-grader has severe ulcerative colitis, an inflammatory bowel disease that increasingly, and somewhat mysteriously, strikes children.

The number of children afflicted by colitis and another inflammatory bowel disease, Crohn’s disease, has increased 50 percent in the past decade, according to the Crohn’s & Colitis Foundation of America.

About 1.5 million Americans suffer from colitis and Crohn’s, about 10 percent of them under age 18.

“We’re seeing younger and younger children getting it over time,” says Dr. Maria Oliva-Hemker, chief of the Johns Hopkins University School of Medicine’s division of pediatric gastroenterology and nutrition.

The reasons for the increase are not clear. But many researchers believe something in the environment must be behind the surge in pediatric colitis, Crohn’s and other autoimmune diseases, which have been on the rise generally.

One theory is that as the developed world has become more hygienic, the body has become less practiced at fighting off bugs – and more vulnerable to autoimmune diseases, in which the body attacks its own cells or tissues.

“Since we know (inflammatory bowel disease) is found in more developed countries, it must be something about the exposures that we are seeing in our day-to-day lives,” Oliva-Hemker says.

“Probably the fact that we are a more hygienic society, the fact that children, even at an early age, are kept in very clean environments – not necessarily outside, playing in the dirt, being exposed to very low levels of routine viruses.”

If the home environment is “too clean early on,” when children start school and are exposed to more bugs, “the immune system goes into overdrive,” she says.

“As we’ve gotten rid of many infectious diseases, the autoimmune and allergic diseases have steadily increased – lupus, allergies, eczema,” Oliva-Hemker says. “And in countries where we still see a lot of infectious diseases, we don’t see them.”

Better awareness of the disease might also be leading to more diagnoses, says Karla Au Yeung, a Hopkins pediatric gastroenterologist who treats Jacob.

“GI in general for pediatrics didn’t start until the mid-’80s,” she said. “The practice is relatively new. I think people are more aware.”

A difficult condition even for adults, inflammatory bowel disease poses special problems for young people who come down with it.

One is the need for constant bathroom access – a particular challenge during recess and outdoor physical-education activities in an era when youngsters generally are not allowed to let themselves in and out of school buildings.

There’s also the likelihood that the disease itself, and some medicines used to treat it, will stunt growth. And there is a good chance that the condition will go undiagnosed for long stretches because many people don’t realize it afflicts children.

“They just think it’s an adult disease if they’ve heard of it at all,” says Oliva-Hemker. “It’s not that unusual of a GI condition, but a lot of folks feel it’s something that’s in the adult world and kids can’t get it – even doctors. … I can’t tell you how many children I’m seeing and the diagnosis has been delayed.”

There is no cure for inflammatory bowel disease. With colitis and Crohn’s, the intestines are inflamed and sometimes pocked with ulcers. The colon alone is affected by colitis; with Crohn’s, the inflammation can occur anywhere along the gastrointestinal tract, from the mouth on down.

Abdominal pain, diarrhea and bloody stools are common symptoms. If left unchecked, the condition can cause weight loss and malnutrition because the body cannot properly absorb nutrients.

There is a genetic component, particularly in cases in which inflammatory bowel disease afflicts young patients. Ten to 15 percent of adults who have the disease have a close family member who has it; the number is 30 percent for children with the disease.

In Jacob’s case, both his father and his maternal grandmother have inflammatory bowel disease. His father was diagnosed in 2004, at age 29; his grandmother, at age 18. Jacob was diagnosed at the end of third grade, as he was turning 9.

Whatever the cause, the disease can take a terrible toll on adults and children.

Some patients can, with medication, keep the symptoms in check. But many suffer periodic “flares,” in which gastrointestinal distress makes it difficult to work or go to school.

“When I have a really bad flare, I basically live in the bathroom that day,” Jacob says.

Having kept a tally at his doctor’s request, he recalls school days when he had to duck out of class 15 or 20 times to go to the bathroom.

Recess was a particular problem for Jacob last year because the school doors were locked when he was out playing. If he needed to use the bathroom, he had to find a teacher outside, borrow her key and find a buddy to return the key to the teacher before he went inside.

This year, Jacob’s mother worked out a plan with his teacher that allows him to have his own key on a lanyard.

“If I have a flare, the teacher’s gonna give me a key,” he says.

Jacob takes medication at least twice every day. When his condition flares, he takes stronger, steroidal drugs.

He suffers from headaches, possibly as a side effect of medication or simply from the sleep deprivation that comes with having to go to the bathroom all night long.

Long-term steroid use can stunt growth and cause other problems. But so can leaving the colitis unchecked. Decreased bone density is common in young patients because it affects the absorption of vitamin D and other nutrients, according to the foundation.

“For pediatrics, growth is probably the No. 1 (problem),” Yeung says. “One reason is, if it’s not under control, there’s malabsorption of nutrients. And you’re not very hungry because your tummy hurts.”

It is nevertheless possible to lead a full life with inflammatory bowel disease.

“I have students with this disease that are national volleyball players, football players,” Yeung says. “But it’s still hard.

“It’s one thing if you have asthma and you can’t breathe. It’s another thing if you have diarrhea.”