But you shouldn’t have to shy away from social engagements or walk into every meeting wondering whether you’re going to be the center of attention for all the wrong reasons. We asked real people and their doctors about how to deal with the most embarrassing Crohn’s symptoms. Here’s their advice.
1. Passing Gas
Natalie Rosenthal, 40, of Atlanta, was diagnosed with Crohn’s when she was 9. She says coping with the condition is a challenge, because you never know when you’re going to have embarrassing Crohn’s symptoms — especially, passing gas out in public. When she was young and this started happening, she decided to laugh off the furious flatulence. “If you don’t laugh, you’ll cry,” she says. After a while, her friends started laughing with her, not at her. There is an expression, “Laugh at yourself and the whole world laughs with you,” says Frank Sileo, PhD, a psychologist in Ridgewood, New Jersey, who has Crohn’s. But, he cautions, it’s important for you to set the tone and boundaries regarding humor. “Others may use it and not be aware that you’re not feeling well or just not in the mood. Let them know if this happens.”
2. Strange Stomach Sounds
When Christine Morris, 29, of Atlanta, was first diagnosed with Crohn’s disease at age 16, she remembers sitting in her classroom as her stomach made all kinds of weird noises. Her tip for coping with this embarrassing Crohn’s symptom was to wear bulky clothes. “I wore a lot of sweatshirts when I was in school, because the bulky material helped muffle the noise.”
3. Having to Go at Inopportune Times
When Sileo, 49, accepts dinner invitations from friends, he worries that he may experience a Crohn’s flare and suddenly have to head home to the comfort of his own bathroom. A common hurdle of coping with Crohn’s is its unpredictability, says Peter Doyle Higgins, MD, PhD, director of the inflammatory bowel disease research program at the University of Michigan Medical School in Ann Arbor. If there’s a chance you’ll have to duck out of a social engagement early, Sileo recommends driving separately. “If you use your own vehicle, you can apologize, excuse yourself, and not feel so bad about leaving early.” Keeping a few emergency items on hand — extra underwear, baby wipes, deodorizer — can also help ease your mind, because you’re more prepared and able to remedy an accident if needed.
4. Incontinence
Morris has had a number of colon and rectal surgeries during her 13 years with Crohn’s disease. “As a result, I have trouble with incontinence,” she says. To deal with this embarrassing Crohn’s symptom, Morris always wears panty liners. She also keeps what she calls a “Crohnie’s kit” with her at all times: extra panty liners and underwear in a holder that’s the size of a pencil pouch. It fits neatly in her purse so she has it with her wherever she goes.
5. Bathroom Noises
When you’re in a public restroom, you’d rather avoid making the cacophony of sounds that often accompany Crohn’s symptoms, Morris says. That’s where a smartphone app that disguises toilet noises — by making other sounds like running water or the blowing of a hand dryer — can come in handy. A line of odor-neutralizing underwear that filters out smells using a carbon cloth could also be useful to combat awkward symptoms. Sometimes, though, Morris skips the public restrooms altogether and seeks out a family’s bathroom instead. For example, on her way home from church, she’ll stop at her in-laws’ house nearby rather than use the church’s facilities.
6. Diarrhea
Still, public restrooms can be a lifesaver when you do need to go, and it’s always a good idea to locate them as soon as you get to a new place. When diarrhea strikes, a public restroom may be your only option — and that means you may end up occupying the stall for what seems like an eternity when someone else wants to use it. Morris keeps antidiarrheal medications on her at all times, just in case. “It can help with diarrhea, gas, and bloating,” she says. “And it provides relief pretty quickly.” One caution: Don’t start taking any medications without talking to your doctor first.
7. Changes in Appearance
When Rosenthal took corticosteroids for her Crohn’s disease in her teens, it would cause her face to look puffy — an uncomfortable situation, especially when you’re young. (Some facial swelling, known as moon face, can occur with steroid usage, according to a study published in the Cochrane Database of Systematic Reviews. Acne is another side effect.) “It was difficult to walk the halls of school, because people could see something was wrong,” Rosenthal says. For this and other embarrassing symptoms of Crohn’s, Rosenthal relies on positive reinforcement from a strong support network, starting with her family. “My parents told me I was beautiful,” she says, “and it helped me to have confidence in myself.” She adds that it also helps to accept your disease and remind yourself that the embarrassing symptoms will pass.
