'When you spend much of your life being sick, it's easy to develop FOMO': Traveling with IBD

Katie Jackson
Special to USA TODAY
  • Three million Americans suffer from Inflammatory Bowel Disease – either Ulcerative Colitis or Crohn's disease.
  • "Food or water-based infections can trigger an IBD flare," says Dr. Bradley Morganstern.
  • Some studies have shown high altitude flying can worsen an IBD flare.

In person, I'm a 32-year-old travel writer. On paper, I'm a statistic who should stay home.

In 2007, a colonoscopy showed I had Crohn's disease. The grim diagnosis was actually a relief. For years family and doctors accused me of having an eating disorder. My stomach always hurt, and I couldn't keep on weight. I felt alone. But I wasn't. 

Three million Americans suffer from InflammatoryBowel Disease – either Ulcerative Colitis or Crohn's disease. Like my mother and my brother, I'm a Crohnie. Even more Americans, about 10% to 15% of the population, suffer from Irritable Bowel Syndrome. It has similar symptoms – diarrhea, constipation and abdominal pain – but it isn't classified as a disease. 

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Whether they have the "D" or the "S," people with bowel issues tend to stay home. In addition to not feeling 100%, the fear of not being able to find a restroom can be crippling.

A 62-year-old Australian recently asked how I travel with Crohn's. He's had it for 10 years, and it's kept him from Thailand – a place he really wants to visit. He emailed me that he's terrified of "those rare but awful moments when you realize you need a toilet within the next minute." That's a valid fear. 

What to consider when traveling with IBD, IBS

I manage by looking for bathrooms the way flight attendants want you to look for your closest emergency exits. I don't wait until I need them to start looking for them. And I keep change in my pockets and tissues in my purse. In other countries, toilets are sometimes accessed by feeding coin-operated turnstiles. In developing countries, it's often BYOTP (bring your own toilet paper).

Fun fact: in France, don't be confused by pink toilet paper. 

Finding food that doesn't upset my sensitive stomach is also challenging. I usually bring a suitcase full of protein bars when I travel in Africa, Latin America and Asia. It's the spicy stuff, or the street food cooked in different conditions, that usually gives me travelers' diarrhea.

Katie Jackson at the Eiffel Tower in Paris.

"Food or water-based infections can trigger an IBD flare, so it's best to avoid any raw or potentially undercooked foods and be aware of any specific recommendations for use of tap water versus bottled water," advises Bradley Morganstern, Medical Director of the IBD Program at NYU Langone Long Island Hospital. He also recommends informing your doctor of your travel plans.

"Depending on where you are traveling to, you may need certain vaccinations," says Morganstern. "People who take biologic medications for their IBD cannot receive any live virus vaccines, some of which are required for travel in South America and Africa."

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Since I'm on a biological medication – a form of chemotherapy I receive every eight weeks – I wasn't able to get the yellow fever vaccination needed to enter Rwanda. But that didn't keep me from the mountain gorillas. Foolishly, perhaps, I went with a doctor's note saying I couldn't receive live vaccines. Rwandan immigration let me in. Still, it's a risk most people with autoimmune diseases wouldn't be willing to take.

Not-so-fun fact: It's estimated as many as 50 million Americans suffer from autoimmune diseases including rheumatoid arthritis, lupus and in my case, Crohn's. 

What about travel insurance?

One tricky part of traveling with a preexisting condition is finding affordable travel insurance. Fortunately, my regular health insurance, Blue Cross Blue Shield of Montana, covers me for emergencies abroad. I've never had to use it.

When I had an unexpected operation to remove most of my large intestine in 2020 I was in Colorado. My surgeon told me to rest for eight weeks. After eight weeks I flew to Portugal. People called me crazy for going so soon after major surgery. They called me irresponsible for going during a pandemic. I listened to their concerns. But I didn't cancel my trip. 

After all, what helped me stay positive despite the pain was a promise I made to myself that I'd travel abroad as soon as I got better. I needed something to look forward to. I also needed to make up for lost time. When you spend much of your life being sick, it's easy to develop FOMO (fear of missing out). 

Story continues below.

In Portugal, I learned to surf, castle-hopped by e-bike and tasted wines in the Douro Valley. Then, I flew to Zambia.

Fun fact: The go-to safari drink, a gin and tonic, was originally believed to cure malaria.

Not only did I have my own toilet at Puku Ridge, the luxury lodge where I stayed, I also had my own plunge pool. Hostels are cheaper. But you can't put a price tag on the peace of mind that comes with having your own bathroom. 

When things go wrong

Two months after returning from Zambia I left for Costa Rica and Nicaragua where I did have sporadic diarrhea. But it was nothing compared to what I had in Indonesia.  I quickly learned most pharmacists there treat dozens of tourists a day. They know exactly what medication to hand out. And unlike in the U.S. sometimes you don't need a prescription to get the strong stuff. 

Still, there's a difference between food poisoning and a flare. Flares can last months.

"If you flare while traveling, you should immediately contact your doctor to discuss a plan," says Morganstern. "​​And if your disease is currently flaring, you may want to consider delaying your air travel plans." Some studies have shown high altitude flying can worsen an IBD flare

My next flight is to Ecuador. And for Christmas, I treated myself to a Galapagos cruise. Knowing there was no hospital or pharmacy on the boat, I chose Hurtigruten. It's not the cheapest cruise, but it has the best reputation. Forget the budget airlines and motels. I've been there and done that. These days, I always travel with highly rated companies to avoid added stress.

Even if you don't have a disease or disability, life is stressful. But as Socrates said, "The unexamined life is not worth living." And as Centennials say,  "YOLO."

Sure, I have a chronic illness, for which there is no cure. But I don't let it hold me hostage. I let it motivate me to see more of the world.