No one diagnosed with Crohn’s disease or ulcerative colitis understands everything about their condition. Scientists and doctors don’t. Researchers have spent millions trying to figure it out.
So when someone doesn’t know what IBD is all about -- that those letters stand for inflammatory bowel disease, or that it's an umbrella term for Crohn’s and ulcerative colitis -- we shouldn’t be surprised.
These diseases are complicated. They look different with every person. And they’re often uncomfortable...
When you have a condition like Crohn’s disease or ulcerative colitis, it can flare at any time -- even in the middle of the meeting of your life.
Megan Starshak, a marketing coordinator in Milwaukee, knows that’s possible. She’s been up-front about her ulcerative colitis with her bosses and coworkers throughout her career.
“In my first job out of college, I worked in an office with only six people. In an office that small, people notice when you’re in the bathroom for a while,” Starshak says.
Sometimes, her ulcerative colitis would flare in the morning. “I told my boss right away when it started, and that if I’m a few minutes late, it’s because of my colon, not because I’m lazy.”
Clear communication like Starshak’s is wise if you have inflammatory bowel disease (IBD), says Joshua R. Korzenik, MD, director of the Crohn's and Colitis Center at Brigham and Women’s Hospital.
“One of the difficulties with having an IBD is that most people who have it look healthy. You might be feeling miserable, but your boss or colleagues might say, ‘Well, you look fine.’”
Korzenik says it’s up to each person to decide how open to be about their condition, but at some point, you'll probably need to clue your employer in.
“You might not know when a flare will happen, but other things are predictable, like doctor’s appointments and IV treatments that require you to take time off, or operations that might limit your abilities while you recover.”
Starshak is in remission, which generally means you have few to no symptoms. But her current boss knows what’s possible.
“I explained that this is what I have and how it affects me, and I said I know all of this because I’ve had it for over 10 years. I let my boss know I’m willing to come in early or stay late to make up time [for appointments or being late because of a flare].”
It's important to know your rights, says Patricia Kozuch, MD, director of the Inflammatory Bowel Disease Program at Thomas Jefferson University Hospitals.
“Chronic conditions like IBD are covered under the Americans with Disabilities Act, and employers are required to provide reasonable accommodations so people can do their jobs,” she says. “For IBD patients, that could mean time for frequent bathroom breaks, a workstation that is closer to a bathroom, and time to accommodate appointments.”