If you are like me, this is the last thing you want to talk about! Bathroom issues, very private stuff. Yet, very much a part of life with any illness that hits any portion of the digestive system, so here we go!
When I use the word traveling, I mean anything from running local errands to taking a 9-hour road trip, to getting on an airplane and attending a business workshop. I have been caught in uncomfortable, embarrassing situations in all three scenarios. And travel for fun? More than one trip has been severely curtailed or aborted.
Whether your rare illness affects your upper GI tract or intestines, with active disease, any trip away from home can be fraught with anxiety. In my case, air conditioned environments could also set off a sudden need to head to a bathroom, making a shopping trip to some stores pretty much impossible, and the need to take great care in public seminar rooms necessary. OK, so what can you do?
Schedule Travel around your body’s schedule
Except when my symptoms were so active that traveling was basically impossible, I learned to understand and respect the rhythm of my body. Fortunately for me, once I got relatively stabilized, I could be relatively certain that from 10:00 AM onward, that urgent need wouldn’t arise at inopportune times. Not at first and not always, but sufficiently enough.
The most difficult and embarrassing moment came early-on in my illness–although my struggle is with Crohn’s Disease, I’m sure many rare patients struggle with similar symptoms. I attended a company-wide annual meeting for store managers. I remember sitting in a bathroom stall, not feeling well at all, and some woman saying, out loud and loudly, it stinks in here! Mortified! Oh well. I am still happy when I happen upon a one-person bathroom. I am also less self-conscious. As they say, everybody poops!
Morning business meetings and early morning flights? Out! Even now, 10 years into remission.
When I attend conferences, I do not push myself into engagement until I feel comfortable in my body. I often get breakfast and bring it back to my room, then head down when I am ready. When I did public speaking engagements, I was also cautious about the schedule.
Be self-empowered regarding your needs and limitations
I have mentioned my difficulty with air conditioning. You’ll see just how crazy I am about it in this section. I have HAD to get comfortable taking care of my own needs because my issues are not everyone’s issues. As a matter of fact most people feel warm long before I do, even now.
I have been known to carry a blanket into an all-day seminar. If it is a business event, as opposed to something I am doing just for my own development, I always bring an outer garment to either wear or drape over my legs, depending on where the air is hitting my body.
If I realize I am sitting directly under an air conditioner I will get up and move to another seat.
When attending business events where heels and business dress are expected, I have no trouble wearing leggings under my pants to help ward against the impact of overly air-conditioned rooms.
If certain smells cause your body to rumble, move to another location or turn away from the offender. (I recently asked a friend who uses a patchouli-oil based soap not to use it the day she drove me to my colonoscopy. Yes, I did.) If you can’t eat the food being served at an event, ask for alternatives. Now that various food sensitivities and allergies have been acknowledged, many restaurants offer alternative menus. And, if they don’t, ask about ingredients if you are uncertain. You don’t have to be obnoxious about it, just ask. You might also bring your own snacks.
The “I Can’t Wait Card” and Your Rights as a Traveler
The Crohn’s Colitis Foundation (CCFA.org) is an excellent resource to help you navigate travel so that you can take care of your needs as discreetly as possible. You can find tips about preparing for travel, packing ostomy bags and supplies, and packing medications here: https://www.ccfa.org/resources/TSA-air-travel-101.html
They have also created a nifty little card that you can print from their website that says “I Can’t Wait.” You can present the card to the TSA staff, airline attendants and to businesses where public access to the bathroom is limited or prohibited. Here’s a link to download or print the card: www.ccfa.org/assets/pdfs/TSA_card.pdf
If your illness is not represented by CCFA, check out the resources offered by the organization that represents yours.
Be prepared to abort or limit activities without apology
If you are still trying to be a hero, or to pretend that all is well so that you don’t have to deal with the potential blowback from the judgments and expectations of others, you will have to get over it. This is the curse and the gift of this journey. You “get” to learn to accept this aspect of your life and allow your body to guide your actions. Strength comes from the inside. Body issues are body issues. You have to deal with them but THEY don’t define you.
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