When Lisa Bain first noticed the look of pain and horror on her daughter Ally's face, she didn't need to ask her what was the matter. The two were shopping in an Old Navy outside of Chicago, and Ally, then 14, had suffered from Crohn's disease for nearly three years.
Few people will ever understand the fear and anxiety someone with Crohn's feels at the thought of appearing in a public place while in the throes of a flare up. An immune disorder, Crohn's (and similar diseases like ulcerative colitis) is characterized by inflammation of the gastrointestinal tract, resulting in diarrhea, abdominal pain, and bleeding.
While in the midst of a flare up, a person with IBD may have to use the bathroom upwards of 30 times a day. As the gastrointestinal tract becomes more inflamed, he or she is unable to control the bowels for more than a few minutes at most. In some cases, it can be less than 60 seconds.
"Most people who have inflammatory bowel disease can always point to where the restrooms are," says Ally, now 22. "They know which restrooms are nice ones, even though when you have to use one you don't even care anymore what the facilities are like. A lot of people can map out exactly where those restrooms are within seconds after arriving somewhere. Many times people won't go somewhere unless they know where the restrooms are located ahead of time."
So after the sharp pains began needling Ally's abdomen, both she and her mother knew she had mere moments to get to the bathroom. Lisa quickly tracked down a fitting room employee and asked him where the customer restrooms were, to which he replied with a phrase every IBD sufferer dreads: "no public restroom."
Hearing those three words brought Ally from a state of anxiety to one of outright panic. As anyone who has IBD knows, the near-constant fear of humiliation is perhaps the worst aspect of the disease, worse even than the physical symptoms. For a girl like Ally, who was two months shy of starting her freshman year of high school, the idea of a life full of such humiliations was terrifying.
"I was at that point in my life when a lot of people are trying to figure out who they are, and yet I'm still battling with whether I can get to the restroom in time," Ally recalls. "So it really makes you challenge that self identity concept because I felt so helpless."
Lisa, not ready to give up without a fight, asked the employee to flag down his manager. Ally, by now hunched over in pain, watched with welling tears in her eyes as the manager walked slowly over to them. When he arrived, Lisa explained her daughter had Crohn's and needed to use the employee restroom. After claiming he knew what the disease was, he said Ally wouldn't be permitted to use the store restroom -- he was making a "managerial decision." He then suggested they cross a four-lane highway to use a restroom in another store.
Within moments, Ally lost what little control of her bowels she had and soiled herself.
"It's still very scarring," she says. "For so long I fought for it not to define me or beat me, and then at that moment I felt like it had."
Lisa was seething in anger. When they returned to their car, she made a solemn promise to Ally: this would never happen to her or anyone else again.
Though that store manager may never know it, by denying Ally use of the bathroom he triggered a chain of events leading to a nationwide movement aimed at reforming state bathroom policies. In the eight years since, 13 states have passed laws forcing businesses to offer access to restrooms for those suffering from both bowel and bladder control problems. Many refer to it by the same name: Ally's Law
Why has support for these reforms suddenly exploded? Dr. James Lewis, a professor of medicine and clinical epidemiology at the University of Pennsylvania, says the rise of autoimmune diseases has reached "epidemic" proportions.