Inflammatory bowel disease becoming more common

Emily Morgan is a high school junior, an A-honor roll student and award-winning distance swimmer.

Here's another way she stands out: She doesn't have a colon.

The 17-year-old from Shelby had her large intestine surgically removed last summer to relieve symptoms of a chronic bowel disease called ulcerative colitis.

Today, she's cured, and she's been chosen as an Honored Hero by the Crohn's and Colitis Foundation of America. In this role, she's speaking out to create awareness and raise money through the annual "Take Steps to Be Heard" campaign.

One of Emily's messages is that Crohn's disease and ulcerative colitis - the two major forms of inflammatory bowel disease (IBD) - are on the rise in children.

The diseases, marked by chronic inflammation in the intestines, affect about 1 million people in the United States, and about 20 percent develop symptoms during childhood.

Multiple studies show that childhood diagnoses of the bowel diseases have more than doubled in the past 15 years, with noticeable increases among Hispanic and Asian youths.

Researchers don't know why this is, but they agree it's cause for concern. Children affected by Crohn's and colitis often grow more slowly during critically important developmental years because they may not eat enough or may have trouble absorbing nutrients from food. Children with IBD also experience higher rates of depression and anxiety.

Diagnosis may be delayed because symptoms, such as diarrhea and abdominal pain, can be associated with many other illnesses and are embarrassing to discuss.

"We are seeing younger and younger kids getting diagnosed," said Dr. Vani Gopalareddy, a pediatric gastroenterologist at Levine Children's Hospital in Charlotte. "I've seen patients with ulcerative colitis as young as 6 months. And if kids get it young, it tends to be more aggressive."

IBD has been called a "silent disease."

"Let's be blunt," said Dr. Sandra Kim, a pediatric gastroenterologist at UNC-Chapel Hill School of Medicine. "People just don't talk about intestinal disorders ...

"They feel that somehow there's a shame to it. I want to help take away this perceived stigma. There's nothing to be ashamed of."

Difficult to diagnose

Emily Morgan was 14, finishing eighth grade, when she came down with mononucleosis, an infection common among teens, and never seemed to get over it.

She began having diarrhea and cramps different from anything she'd felt before. She noticed blood in the toilet but waited several weeks before telling her parents. "I thought 'Oh, well, it will go away.'"

Her mom took her to the pediatrician, who referred them to Gopalareddy.

After Emily had a colonoscopy, the first of an eventual five, she was diagnosed with ulcerative colitis.

From Gopalareddy, she learned more about IBD:

Ulcerative colitis causes inflammation in the colon, or large intestine.

Crohn's disease can affect the entire digestive system from the esophagus to the colon.

Both can cause bloody diarrhea and stomach pain, but symptoms are often more subtle. For example, poor weight gain is often a sign of Crohn's disease but may not be interpreted immediately as a signal to see a specialist.

"So many kids complain of belly pain," Gopalareddy said. "Parents tend to ignore belly pain more than blood."

Both Crohn's and colitis are treated with medicines that suppress the immune system and reduce inflammation. Patients also may take corticosteroids or medicines known as biologics, such as Remicade, that are used to treat inflammation. Some patients achieve remission on combinations of these drugs. Those who don't may also need surgery. The extent of illness ranges from mild to severe.

For two years, Emily tried various combinations of drugs, working up to Remicade injections. She continued swimming and, as a freshman, performed with Shelby High School's chamber orchestra at Carnegie Hall in New York. But she never achieved a full remission.

At times, she took 13 pills a day, including vitamins and probiotics. She missed a lot of school - 30 days as a freshman, 40 as a sophomore - as her symptoms continued to flare.

Causes unknown

In 2009, Gopalareddy referred Emily to Chapel Hill for a second opinion. There, she and her parents, Jodi and Joe Morgan, met with GI specialist Kim, who agreed it might be time to consider surgery.

This option is usually recommended only after patients have tried all the medicines and failed to improve.

Removing the colon can cure colitis. But it doesn't cure Crohn's. For the latter, surgery is used to remove diseased portions of the intestines, but patients usually continue taking medicine.

The cause of IBD is unknown.

Kim and other experts suspect it's a combination of genetics and environment. Someone who is genetically susceptible is exposed to environmental triggers, such as intestinal bacteria that cause infection and inflammation.

"It's not a specific bacteria," Kim said. "It's how your body processes certain bacterial proteins. This can be influenced by certain genes. ... In some people, these bacteria cause absolutely no problem."

More than 100 genes have been linked to Crohn's and colitis, Kim said. UNC-Chapel Hill is studying patients for years to identify which genes they have, which triggers result in which symptoms and how they'll respond to treatments.

Some doctors speculate IBD could be related to sanitation practices in the United States and other industrialized nations. This keeps people from being exposed to germs and developing strong immune systems that resist disease.

"You have to wonder," Kim asked. "Have we become too clean?"

Surgery and recovery

The first of Emily's two-part surgery took place last June, at the end of her sophomore year.

Dr. Mark Koruda, a UNC surgeon, removed her diseased colon. Then he fashioned the lower end of the small intestine into a pouch that he connected to the rectum.

To give the newly formed pouch time to heal, the surgeon also performed a temporary ileostomy, creating a hole in Emily's abdomen to which he connected her lower intestine, or ileum. Waste would pass into a bag attached to her abdomen for a few weeks.

Emily went home from the hospital five days later, after learning how to empty and clean the bag. "I was fascinated by it," she said. "I wanted other people to know about it, especially people my age. If people wanted to see my ileum, I would show them."

About seven weeks later, after the pouch healed, Emily went back for surgery to close the hole and get rid of the bag. Today, the internal pouch collects waste in place of the colon. Bowel movements occur more frequently but in the normal fashion.

Emily went from taking 13 pills a day to none. "Colitis doesn't 'own' me anymore," she said. "Ever since surgery, I feel like a normal teenager."

She continues to swim and make straight A's.

Because of her experience, she has decided to go to medical school and specialize in pediatrics. She'll be telling her patients how, as a teenager, she refused to be embarrassed about having a chronic bowel disease.