It’s not as simple as just marking your calendar.
Whitney A., 36, who was diagnosed with ulcerative colitis when she was 16 years old, says it’s hard to go anywhere that requires long car rides. “Planning ahead is crucial. I work to determine where bathrooms are located all along my intended route ahead of time,” Whitney tells SELF.Mary Elizabeth U., 34, was diagnosed with ulcerative colitis 10 years ago after having a lot of diarrhea, cramping, and weight loss.
“If I’m going to a wedding, I will talk to the bride or groom to see what they’re going to have. If I go to a restaurant, I’ll look up the menu ahead of time,” she tells SELF. “If there isn’t food I can have, I’ll bring something of my own or eat before I go.”Rebecca B., 43, was diagnosed with ulcerative colitis when she was 16 after having symptoms like incontinence,If Rebecca is out with a new friend or at a work function with people who don’t know about her condition, she often brings it up.
Whitney agrees that discussing her condition openly and setting expectations about her needs makes socializing so much easier. “Friends know I may need to scope out bathrooms, stop to use a bathroom more frequently than most, or potentially cancel plans,” she says.Megan says never knowing when a flare-up will start is one of the hardest aspects of managing ulcerative colitis. “I might be feeling okay when I go out, but a bowel movement could hit at any time,” she says.
That’s why Megan keeps a “clean-up kit” handy, which was crucial in her early 20s when her symptoms were at their worst. “Before I was in deep remission, I’d always have a clean-up kit with me that had wipes, hand sanitizer, and underwear. I’d keep a whole extra pair of pants in my car,” she says. Just knowing that she has whatever she needs for a worst-case scenario makes her feel more confident about making plans.
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