A dinner with friends should be about the food, conversation, and maybe a little gossip, not begging for your seat at the restaurant to be very close to the bathroom.
But when you’re living with ulcerative colitis (UC), going out can come with a mental checklist that other people may never consider: Where’s the nearest restroom? What can I eat? What if I suddenly need to leave? What if I have an accident?
That fear can make you want to decline invitations, only go to familiar places, or stop making plans altogether.
But experts say you don’t have to accept isolation as part of life with UC. With the right treatment and some practical preparation, you can continue to enjoy restaurants, concerts, dates, parties, and other things that make life fun.
That fear is common, and according to Dr. Alyssa Parian, director of the Center for Inflammatory Bowel Disease at Hackensack University Medical Center, it’s often the biggest thing standing between UC patients and a normal social life, bigger, in some cases, than the symptoms themselves. “Bowel urgency and the fear of fecal incontinence are the top barriers I see,” she says.
In other words, managing your social life starts with managing your UC.
RELATED: Why Black Patients Living With UC Shouldn’t Settle for “Good Enough” Care
If you’re constantly canceling plans, planning every outing around bathroom access, or worrying about an accident every time you leave home, don’t assume that’s what living with UC has to look like.
Dr. Parian says patients should work with their gastroenterologist to optimize their medication regimen and determine whether their intestines are adequately healed.
According to Mayo Clinic, changes in bowel habits—including increased diarrhea or urgency, blood in the stool, and abdominal pain—can be signs that ulcerative colitis is becoming more active. Dr. Parian recommends contacting your care team if these symptoms persist for more than 48 to 72 hours.
Nocturnal symptoms, like being awakened from sleep to have a bowel movement, are another important warning sign.
“Don’t wait weeks to see if it clears up on its own,” Dr. Parian says. “We always like to hear from our patients sooner rather than later since treating a flare early in the course is easier than once it’s more severe.”
RELATED: 5 Signs It May Be Time To Reevaluate Your UC Treatment
Once your UC is appropriately managed, a little planning can make socializing feel much less stressful.
Know where the bathrooms are. If you’re trying a new restaurant, attending a concert, or heading to a stadium, look up restroom locations before you go. The Crohn’s & Colitis Foundation’s “We Can’t Wait” app can help by allowing users to locate publicly accessible restrooms and identify businesses that are aware of and accommodating to people with inflammatory bowel disease (IBD).
If you’re attending an event with assigned seating, Dr. Parian recommends choosing an aisle seat or one near an exit when possible.
The goal isn’t to obsess over bathroom access. It’s to know you have a plan if you need one.
Restaurants can introduce another layer of uncertainty because meals may contain more oils, butter, fats, dairy, or other ingredients than you typically use at home.
Dr. Parian recommends checking the menu online before you leave and choosing foods you know your body tolerates.
For some people with UC, lactose intolerance can contribute to bloating, gas, and diarrhea. If you think dairy is triggering symptoms, talk with your healthcare provider about whether testing, avoiding dairy, or using an over-the-counter lactase enzyme makes sense for you.
And if your disease is currently active, Dr. Parian suggests eating a meal you know you tolerate before heading out rather than relying on an unfamiliar restaurant menu.
Bringing a safe snack can also give you a backup option if you can’t find something that works for you.
As for alcohol, there’s no universal rule that applies to everyone with UC, but Dr. Parian notes that beer and carbonated beverages can be particularly poorly tolerated, especially when combined with restaurant food.
RELATED: 21 Things To Do During a UC Flare-Up
Dr. Parian recommends carrying a discreet emergency kit that includes:
She also recommends carrying the Crohn’s & Colitis Foundation’s “I Can’t Wait” restroom access card, which can be requested free of charge and may help you request access to an employee-only restroom when a public restroom isn’t available.
Put everything in a small pouch or bag that fits easily into your purse, backpack, or car.
RELATED: Ulcerative Colitis: What It Is, What It Isn’t and Why You Should Care
If you’re out with people who don’t know about your UC, you may worry about what to say if you suddenly need to run to the bathroom or why you have dietary restrictions.
You don’t owe anyone your medical history.
If you feel comfortable, something as simple as “I have a digestive condition, so I may need to use the bathroom quickly” can remove some of the pressure.
Dr. Parian points out that secrecy can fuel anxiety, and anxiety can affect gut motility through the gut-brain connection.
The more you feel like you have to hide what’s happening, the more stressful the situation can become.
For some people with UC, the fear of an accident becomes so powerful that they begin avoiding social situations altogether.
That can create a cycle of you worrying about having an accident, your body responding to the stress, your gastrointestinal symptoms worsening, and you becoming even more afraid of leaving home.
Dr. Parian says behavioral approaches, including cognitive behavioral therapy (CBT) and gut-directed hypnotherapy, can help some patients manage disease-related anxiety.
Mental health support can be especially important when UC begins affecting your relationships, social calendar, work, or willingness to leave the house.
“[UC] often forces patients into isolation,” Dr. Parian says.
But that’s not something you have to accept.
Managing UC isn’t only about getting through the day without symptoms. Your ability to enjoy dinner with friends, attend your favorite concert, go on a date, travel, or leave your house without fear is part of your quality of life.
“If you are constantly modifying your social calendar, canceling plans, or mapping out bathrooms just to leave the house, your UC is under-treated,” Dr. Parian says.
If UC is controlling where you go—or whether you go anywhere at all—tell your gastroenterologist exactly how your symptoms are affecting your life. Your treatment plan may need to be reassessed, and additional support from a dietitian or mental health professional may help.
You shouldn’t have to choose between managing your UC and having a life. With the right treatment and a little planning, you can make room for both.
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