Familial Adenomatous Polyposis Travel Guide

Be the leader of the pack.

A successful voyage begins before you even leave the foyer. Make your packing list and check it twice. Chances are you’ll be able to pick up a spare toothbrush at your destination. Extra ostomy bags or prescription meds on the other hand may pose more of a challenge. If you’re going abroad, check to make sure it’s legal to bring your medications into the country (pain medication may require special precautions). Pack all of your medications in their original containers in your carry on bag just in case your luggage gets lost en route (remember, medically necessary liquids are allowed an exemption from the 3-1-1 liquids rule on flights). Likewise, if you have an ostomy, pack your supplies in your carry on as well as your checked luggage and bring extra (given that you may be trying foreign cuisines, your ostomy could react differently than usual or your travel plans could be delayed). Although you are allowed to bring medical scissors with blades less than four inches on planes within the U.S., to be on the safeside, pre-cut your pouches and stash your scissors in your checked bag.

Also, and this is good form for any traveler, pack a spare set of clothes in your carry on should any accidents (including lost luggage) occur. Stowing a roll of toilet paper and some mini kleenex packs in your luggage never hurts either (hotels rarely shell out on the extra soft toilet paper and some countries use water instead of toilet paper for cleansing which can irritate your already sensitive skin).

Plane plan.

Feel secure going through security by coming prepared. Fill and print out the TSA Notification Card and show it to a TSA agent if you feel physically unable to make it through screening unassisted or if a TSA agent is giving you trouble because of your disease. This TSA talking points card and guide from ostomy.org, designed for those with IBD, provide guidelines for communicating your needs and rights to TSA agents. As an added precaution, bring a note from your doctor explaining your diagnosis.

Right before you board, hit the bathroom. For the plane ride itself, reserve an aisle seat near the lavatory. If all of the aisle seats are taken, let the person checking you in know you have a medical condition that requires frequent bathroom trips (it doesn’t always work but, often they’ll try to be accommodating). Due to the cabin pressurization, your pouch may fill with gas more frequently so avoid carbonated drinks, gum, and sucking candies. Speaking of cabin air, airplanes are very dry so stay hydrated.

For the inevitable airplane bathroom visit(s), wear socks or slip on shoes (TOMS are a personal favorite) that you can throw on and off quickly. While small, there are perks to airplane lavatories. Unlike most public restrooms, they’re private and the ambient airplane noise drowns out bathroom sounds. If you are taking a plane abroad, contact your health insurance company ahead of time to find out what services you are entitled to abroad and consider purchasing travel insurance just in case your health demands an emergency plane trip out of the country.

Have a road map.

Hitting the open road? Leave at a time when you generally feel your best. Add an extra 15 minutes per every estimated hour of your trip to account for restroom stops and breaks. Pull off at a rest stop, exit, or if need be, the side of the road, if you’re not feeling well (remember, you’ve built in extra time to your journey). Have a towel/scarf/privacy curtain, hand sanitizer, and toilet paper on hand for a makeshift side of the road bathroom in case the next rest stop can’t come soon enough. Crowdsource the nearest (and cleanest) bathroom with these recommended restroom finding apps.

While you can go at your own pace without explaining any pit stops when traveling alone, roadtripping with someone else means there’s someone to take over the wheel if you need a rest. Although friends and family usually are understanding and willing to stop, try one of the following lines if you don’t want to share your medical history with your travel mates: I like stretching my legs every hour; I don’t like to drive on the highway with less than a quarter tank of gas; I’m trying to set the record for number of Starbucks visited on a single trip; let’s turn this drive into a destination itself by visiting some Roadside America sites. You can find extra chronic roadtrip tips from this globe-trekking Crohn'er.

Be accommodating.

If it’s in the budget, reserve a room at a local hotel so you have your own bathroom and a quiet place to crash. Like staying in hostels because of the cost and/or community but afraid of sharing a bathroom? Most hostels have private room options with their own bathrooms so you can have privacy when you want it and still connect with fellow travelers. Although it takes some extra search time, you can also look for AirBnB and Couchsurfing results with a private bedroom and bathroom. If you do need to share a bathroom wherever you end up crashing, remember, everyone has to go to the bathroom and chances are, you’ll never see your bathroom-mates again.

Share your journey.

Travelers love exchanging stories about the places they’ve traversed and often, those tales turn into discussions around the paths they’ve taken in life. A major part of traveling is meeting new people and learning how different people live. Although many leave hoping to discover how locals live, sometimes your world is opened the most by the fellow travelers you meet. Everyone has a story. If you feel comfortable, share yours and help raise global awareness about living with F.A.P. Chances are it will earn you major street cred as you scarf down street food while colonless!