For Stephanie Gish of New Braunfels, TX, taking a vacation can be both exciting and nerve-wracking. “Before a trip, I worry that my Crohn’s disease might flare up, even if I’m currently in remission,” she says. “I get anxious about what restroom facilities I'll have near me, the quality of those facilities, and the food I'll be eating during the trip.”
Crohn’s symptoms like stomach pain, nausea, constipation, diarrhea, and an urgent need for a restroom may make you feel like staying home is the easiest option. But with some careful planning, traveling can be a lot less stressful than you think.
Here’s what helps Gish and other people living with Crohn’s when they take a trip. Their tips may help you, too.
Make a Packing List, and Check It Twice
Before she pulls out her suitcase, Tina Aswani Omprakash of New York City makes an extensive list of every item she may need when she’s away from home, from extra clothing to medications and extra ostomy supplies -- “anything and everything that will make my life easier,” she says.
Don’t forget to pack an emergency kit that you can keep with you at all times. Include toilet paper, tissues, wipes, ointments, plastic bags, and hand sanitizer.
Bring Your Own Food
Salads, ice cream, prepared foods like potato salad … there’s a long list of foods that can set off Crohn’s symptoms. You may find it easier to travel with some of your own food. “On one trip, I checked an entire cooler onto the airplane with me,” Gish says. “I looked on the airline's website to know what products I could take, weight limits, and how much dry ice I was allowed to pack.”
An apartment-style hotel with a kitchen can help you prep meals like the ones you do at home.
Opt for Comfortable Clothes
“Choose clothes that set you up for success if you feel bloated or are dealing with pain,” says Natalie Hayden of St. Louis. Instead of tight pants or skirts, Hayden prefers to travel in dresses, leggings, and shorts with elastic waistbands.
Talk to Your Doctor
Ask your doctor what to do if you have symptoms on a trip. They can help you write down an action plan. “A good relationship with your doctor can be crucial when you’re away from home,” says Troy Parsons of Vancouver, British Columbia, Canada. Before he travels abroad, he asks his doctor if he can email or text with questions if he has a flare-up.
“Doctors are often happy to help out remotely or send a prescription to a nearby pharmacy if needed,” he says.
Know Where You Can Get Help
Before a trip, Omprakash researches pharmacies, doctors, and hospitals in the area where she’s going. Whether inside or outside the U.S., “I specifically look up IBD specialists and IBD-specialized hospitals to make sure I’m covered.”
To lower the chances of a surprise bill, ask your health insurer what medical expenses it will pay if you need care while you’re out of town.
Plan for Airport Security
For Omprakash, one of the most anxious parts of any trip is going through airport security with her ostomy, medications, and medical supplies in her carry-on. “I’m always stopped, and my stuff is always searched through,” she says.
To make the process smoother, she carries medical notes that explain her ostomy and allow her to carry on injectable medicine. Ask your doctor to do the same for you. You can also print out a Transportation Security Administration (TSA) medical card to show airport security that you may need special screening because of Crohn’s.
Use Online Maps to Find Places to Eat
“Most restaurants post menus, so it’s easy to scout out places in advance,” Gish says. Look for places that offer foods you know you can tolerate. Traveling with others? Let them know ahead of time what’s going on. When Gish tells family or friends that she can eat only some types of food, “they’re more than happy to go [somewhere] where I know I'll find something to eat.”
Have a Restroom Strategy
Look for bathrooms well before you need one. For instance, find out if your bus or train has a restroom. Look for rest stops with public bathrooms along your road trip route. When you fly, choose an aisle seat nearest the toilet. Hayden travels with an “I Can’t Wait” card in her wallet, which explains that she may need to be first in line or use an employee-only restroom.
Try to Stay Calm
If you do get sick while traveling, try your best to stay calm. Stress can make Crohn’s symptoms worse. “I remember to take deep breaths and [tell myself] that I’ll figure it out,” Omprakash says. “I may not be able to control my illnesses, but I can control how I react.”
Meditation, gentle yoga, and talking to a therapist can also help.
“Going with the flow” isn’t always easy when you live with Crohn’s, but “stressing about every detail can make for a terrible trip,” Parsons says. “Just because you have a chronic disease, doesn’t mean you can’t travel. … You just have to be organized and prepared.”