Judy Hoffstein had a moment that was “like seeing the Emerald City” while out with friends one night in Manhattan. It wasn’t a celebrity spotting or some other “only in New York!” occurrence. Rather, Hoffstein was truly shocked when she (finally!) stumbled upon a public restroom in a subway station. (If you’ve ever had to poop while running around NYC or another major city, you know how big of a deal this is.)
She was especially relieved because Hoffstein is one of roughly 3 million people in the US living with Crohn’s disease and ulcerative colitis (UC), the two most common forms of inflammatory bowel disease (IBD). Both conditions are classified as autoimmune disorders; they’re characterized by chronic inflammation in the digestive tract that can lead to potentially debilitating symptoms like persistent diarrhea, severe abdominal pain and cramping, and heavy fatigue, among others.
If you have Crohn’s or UC, you can’t just hold it for very long. During a flare-up, diarrhea can strike urgently—and without warning. On that particular evening in New York City, Hoffstein panicked as soon as she felt her gut gurgle. She knew she had to find a restroom fast: “[People with IBD are] always thinking, always planning, always carrying a change of underwear,” Hoffstein, the chief marketing officer and communications officer for the Crohn’s & Colitis Foundation (CCF), tells SELF. “We’re also just gritting our teeth. The fear of having an accident is a devastating feeling.”
Naturally, this might make you nervous about taking a 10-hour flight in a window seat or attending a concert with port-a-potty lines that snake around the stadium. Rest assured, though: “People with Crohn’s can—and should—be doing all the things they want to be doing in life,” David Rubin, MD, chief of gastroenterology and professor of medicine at the University of Chicago Medicine, tells SELF. “The challenge is to know how to predict or prevent a flare-up.”
Here’s how to have an active, fulfilling, event-packed life—without worrying a bathroom emergency is going to derail your day.
Work with your doctor to find the right treatment.
Crohn’s disease has various stages—you might go through periods where your flare-ups are super-frequent, spotty, or nonexistent (a.k.a. you’re in remission).1 “The goal of every treatment plan is to get your Crohn’s disease to a point where you only remember your symptoms, and aren’t having to deal with them,” Jeffrey Berinstein, MD, a clinical lecturer specializing in IBD at the University of Michigan Medical School in Ann Arbor, tells SELF.
If you’re not in remission, things can get dicey, according to Dr. Rubin: “When you don’t know when that flare may be coming, you [might] become paralyzed by the fear [of one happening]. That’s when you stop doing the things you enjoy or want to be doing.”
There are several medications you can take for Crohn’s, and sometimes surgery to remove parts of the small or large intestine is needed when you have a major bowel obstruction, excessive bleeding, severe inflammation, or a diminished quality of life, per the CCF. Any treatment plan should be highly individualized, depending on your symptoms, what part of your GI tract is affected, as well as your upcoming travel plans—so it’s important to be upfront with a doctor about all of those things.
Pay attention to what factors worsen your flare-ups.
With Crohn’s, symptoms like urgently needing to poop might arise without warning—and for seemingly no reason at all. In one survey of women diagnosed with IBD, roughly 64% had fecal urgency, or the need to rush to the bathroom, always or most of the time.2 (Frustrating, we know.) But according to the CCF, there are a few things that might incite or worsen symptoms, including missing medication doses, smoking, and getting a GI infection. Eating certain foods, not getting enough rest, and feeling stressed can worsen symptoms, too.