Tips for Traveling with Inflammatory Bowel Disease

Nashville, TN.

Nashville, TN.

On Friday I am flying to Charleston for a long weekend with my mom, who is meeting me there. Traveling can be stressful under the best circumstances, and when you have inflammatory bowel disease (or any chronic illness), it is especially difficult. Here are some of the biggest challenges for me when thinking about traveling with IBD, and how I have dealt with them.

Planning

It’s hard to even plan a trip when you’re not sure how you’ll be feeling next week, let alone a few months from now. I’ve had to cancel two trips in the past two years because I was in the midst of a bad flare. It’s expensive and disappointing. But I also want to be hopeful and plan for the future, which can be a difficult balance. Lately I’ve dealt with this by planning things that are easy to cancel, such as a local weekend getaway, or by purchasing travel insurance (make sure you read the fine print and verify that it covers preexisting medical conditions). Even so, it can be difficult to navigate sometimes. My husband and I would like to travel to Europe, and I’m not sure how or when to make that happen.

Bathrooms

The thing I think about most when thinking about traveling is where are the bathrooms and will there always be one when I need it. I’ve almost had accidents several times when traveling, and it is stressful. And of course worrying about it makes it more likely to happen for me. Here are some steps I’ve taken to make it easier:

  • Try to get an aisle seat near the bathroom on the plane or train
  • If I’m traveling with someone and not feeling great, I don’t let them leave their luggage with me while they use the bathroom or get something to eat (because I can’t possibly run to the bathroom carrying both of our luggage)
  • Bring extra underwear, wipes, etc. (see below for a packing list)
  • If I’m going to see a show while traveling, I try to get aisle seats

Activities where there are no bathrooms are just not really an option for me (I once went zip lining for three hours at the beginning of a flare. Looking back, I’m not sure how I did that or why I agreed to it, but luckily it worked out ok!).

Medications

Be sure to pack enough medications for your trip, plus some extra. It’s also a good idea to have a copy of your prescriptions, a list of the medications you’re on, and contact information for your doctors. You may also want to have an idea of what hospitals or medical centers are in the area where you are going, in case you need medical attention.

Now that I am on Entyvio, I check when I am due for an infusion before booking a trip.

The iPhone Health app has a Medical ID feature where you can list your medical conditions, medications, and emergency contact numbers. The Medical ID can be accessed without unlocking the phone by touching “Emergency” and then “Medical ID.”

Germs

While I’ve always been a bit of a germophobe, I am especially afraid of germs now that I am on multiple immunosuppresants.  So I’ve started bringing antibacterial wipes to wipe down things like airplane arms and tray tables, and I always bring hand sanitizer everywhere. Other than that, I try not to worry about it too much.

Eating

It can be harder to control what I eat when traveling. Here are some steps I take:

  • Look at menus before going to restaurants
  • Pack snacks
  • Plan some lighter meals (especially when going somewhere like Charleston)
  • Try not to eat too big a meal or things I am unsure about before an activity like a show, zip lining, or a plane ride

Packing List

  • Extra underwear
  • Depends/pads
  • Wipes
  • Snacks and bottled water
  • Hand sanitizer
  • Sanitizing wipes
  • Enough medication for your trip, plus extra
  • List of medications/prescriptions
  • Phone numbers for your doctors             

These are some of the things that have worked for me when traveling domestically. When traveling internationally, additional precautions may need to be taken with regard to food, water, and medications, and vaccines may be needed for certain places. As with just about everything, I would recommend talking to your doctor before traveling. The CCFA also has a good guide to traveling with IBD.

What advice do you have for traveling with a chronic illness?