Conference aims to shed light on Crohn's

High school senior Ally Bain is having a tough time deciding what college to attend this fall because she doesn't want to lose contact with someone very important to her.

That special someone, however, isn't a boyfriend, childhood pal or favorite teacher.

It's her doctor, David Rubin, a gastroenterologist, who specializes in the treatment of Crohn's disease.

Since age 11, the now 18-year-old Vernon Hills teen has struggled with Crohn's, one of several inflammatory bowel diseases.

It's the type of health problem that when introduced into conversation draws a puzzled look or off-hand joke.

But for Ally, it has meant severe pain, three surgeries and having to urinate as often as 40 times in a day.

She's in remission now, "but I still think about it -- when is it going to flare up again," the teen said Saturday during the annual Crohn's and Colitis Foundation of America conference.

More than 1,000 patients, family members and doctors attended the Rosemont Convention Center event.

Crohn's and ulcerative colitis both are incurable inflammatory bowel illnesses that affect the digestive system. While treatable, these diseases can lead to abdominal pain, frequent diarrhea, fever, weight loss and rectal bleeding, according to the Crohn's and Colitis Foundation.

"Bowel disease is not something people talk about," said Rubin, who organized the conference. "It's very disabling, but there are effective therapies."

Gathering with fellow Crohn's sufferers who can empathize is crucial, said Ally, who's had her good and bad days getting through high school.

There were the friends who sympathized at first, then turned away.

"They were sick of me having Crohn's disease," she said.

There were the classes and special events she missed because of illness.

"I was the kid who wanted the perfect attendance record in high school," she said.

And probably the worst moment was during a shopping trip in 2004 when an unsympathetic store manager wouldn't let her use the washroom and she had an accident.

But that experience led Ally to campaign for a state law that passed in 2005. It requires businesses to let people with certain medical conditions use their bathrooms.

"One voice can make a difference," said Ally, who now is organizing an effort to get similar laws passed around the country.

Rubin, a physician with the University of Chicago Medical Center, said the key is to educate doctors and patients that people with inflammatory bowel disease can live full lives.

"There's a lot of hope and new options," he said.

While the proximity of Rubin is a big factor in deciding what college she'll attend, Ally said she's come a long way in the past seven years.

That includes milestones like attending her school prom this spring -- a first.

She explains, "I try not to let it be who I am."

Help is out there

• About 1.4 million Americans suffer from Crohn's disease or ulcerative colitis, both inflammatory bowel diseases.

• Most patients develop these disorders between the ages of 15 and 35.

• For more information about inflammatory bowel diseases, call the Crohn's and Colitis Foundation of America at (800) 886-6664 or visit www.illinois.ccfa.org.