10 Tips on Handling Life's Uncertainties With UC
Expect the unexpected. While that’s a nice catchphrase for the general population, when you have ulcerative colitis (UC), those words take on a different meaning. The unknown factor of UC can sometimes be more worrisome than the disease itself. “Ulcerative colitis isn’t just about the gut, it’s also a mental health issue in the sense that it can lead to people becoming closed off,” says Niket Sonpal, M.D., gastroenterologist and assistant medical professor at Touro College in New York City. These are a few strategies for taking control when you’re dealing with the uncertainties of UC.
Be Your Own Advocate
Often, UC is an invisible disease. “You could have been up all night but appear fine the next day, so when you say you’re struggling, other people might say, ‘Oh, you look great,’ and downplay your symptoms because you look healthy,” says Megan E. Riehl, Psy.D., a gastrointestinal psychologist and clinical program director of the GI Behavioral Health Program at the University of Michigan. Know your limits: If you’re having a flare, things can seem fine one second and definitely not fine the next. Eliminate that uncertainty by scaling back during this period just in case.
Tap the Right Resources
When you’re having one of those days where you canceled your lunch plans—and now, your dinner date, it’s helpful to talk to someone who can say, “OMG! Me too!” “There are great community resources and support groups for those living with UC,” says Sanam Hafeez, Psy.D., a New York-based neuropsychologist and faculty member at Columbia University. Seek them out: They know the frustration of making—and canceling—plans because they live it, too.
Assume the Worst
While you can’t necessarily control when you’ll get an unexpected flare, that doesn’t mean you’re powerless against your disease altogether. Alleviate those “what ifs” by planning as if the worst could happen, suggests Riehl. “If you’re nervous about a bowel accident or having symptoms in public, keep an emergency kit in your car or at your desk at work that has a change of clothes and some wipes and anything that makes you feel comfortable, so that if you do have an accident, you’ll be prepared,” she suggests.
Build an Entourage
Having UC may not make you feel very glam at times, so it’s key to have people to call for reinforcement on days when you need it most. “The unknowns of UC can cause anxiety and fear, so in addition to a gastroenterologist, many people benefit from working with a mental health professional,” says Riehl. Other people to have on speed dial: your nutritionist, gym buddy, and even your hairstylist—sometimes, helping yourself look good when you feel like crap can be the mental reset you need.
Control What You Can With Food
With UC, it’s true that you never know if certain foods are going to set your body off. But there are a handful of foods you should probably steer clear of, and it’s good to talk with your doctor about what your daily diet entails. “I love it when a patient calls up and says, ‘I’d like to schedule a 20-minute chat to discuss nutrition,’” says Dr. Sonpal. “Most doctors love talking about food because it’s such a vital part of the condition, so don’t be shy.”
How to Handle Dating Uncertainty
Honesty is the best policy with UC and romantic relationships. Yet there’s a fine line between over- and under-sharing, says Riehl. “It’s not like you want to disclose your whole medical history when you’re getting to know someone,” she says. “I work with patients to develop a go-to ‘pitch’ they can use when they’re not feeling well, like ‘I’d love to see you but unfortunately I have a digestive condition and my symptoms are making it hard for me to get out of the house today.’” Have a pre-planned explanation can help keep conversations from getting awkward.
Meet Yourself Where You Are
Think of UC like the weather—when it’s nice out, you take advantage of it by getting outside and on rainy days you hunker down with a good book. With UC, you don’t always know what the next day will bring, so get ahead of that uncertainty by maximizing the days when you feel great. “If you’re feeling well, it’s time to be exercising, eating well, and engaging with friends and family,” says Riehl. “And on days you have to make modifications to your routine based on symptoms or feeling fatigued, that’s OK, too, so you’re not overtaxing your system.”
Learn to Adapt
Having UC means you’re at risk of becoming That Flakey Friend who cancels plans at the last minute. It can get old having to say, “Sorry, I said I could but now I can’t.” Instead, have a friend over rather than meeting out somewhere so you have easy access to the bathroom or schedule a video chat instead. Or choose shopping in a mall over single store visits, so public restrooms are readily accessible. It might not be exactly what you were hoping for, but it’s better to see friends in a modified capacity than not see them at all.
Let It Go
Obsessing over every detail with UC can backfire. “I had one patient whose whole life was surrounded by what to eat and when to take her medications, and she was writing down everything she ate to an obsessive level,” says Dr. Sonpal. By counseling her, he was able to steer her toward a more moderate approach. Stress can make UC symptoms worse, so the more you can accept the uncertainties of your disease, the fewer symptoms you may have. “Living with this disease doesn’t have to control your life,” adds Dr. Hafeez.
UC and Lifestyle: Crohn’s and Colitis Foundation. (2018). “Living with Ulcerative Colitis.” crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/living-with-ulcerative.pdf
UC and Diet: Crohn’s and Colitis Foundation. (n.d.) “What Should I Eat?” crohnscolitisfoundation.org/diet-and-nutrition/what-should-i-eat
UC and Lifestyle: National Institute of Diabetes and Digestive and Kidney Disease. (2014). “Ulcerative Colitis.” niddk.nih.gov/health-information/digestive-diseases/ulcerative-colitis