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My Tips for Road Trips With an Ostomy


When I travel, one of the most difficult things I have had to learn is how to deal with my ostomy — timing bag changes, dealing with leaks, remembering supplies and handling other Crohn’s-related issues. I intend this post to be helpful to people traveling with an ostomy, and I’m going to share some of the experiences I have had since we started this tour.

Timing

As most people with an ostomy know, timing is very important. We all have our own different ways of deciding when is the best time to change our bag. For me, it is in the morning before I have had anything to eat or drink, usually every four days. This being said, it is not always convenient to change my bag in a cheap hotel room that may or may not have clean water/towels. Not to mention that we are usually in a hurry to make it out by checkout time at 11 a.m.

Because of this, I always try to change my bag at home before we leave for a trip. I like the privacy and comfort of being in my own bathroom at home with all the supplies I need. Obviously, this is not always an option, as sometimes we do not come home for weeks at a time, so I am always prepared to change it on the road as well.

Leaks

Even with all the planning in the world, you cannot always control when it is time for a change. Leaks happen even to the most experienced ostomates. I always come prepared with supplies and a change of clothes in case of emergency. Luckily, since we are traveling regularly, I usually have my suitcase in the car wherever we go. This makes it easy to run out to the car and grab whatever I need in an emergency. Unfortunately, leaks do not always happen when we are somewhere “convenient” like a music venue, gas station or restaurant. Occasionally they happen out of the blue while driving down the road in the middle of nowhere with no bathroom in sight.

During one of our more recent trips, I sprung a leak on a curvy mountain road between West Virginia and North Carolina. If you have never driven these roads, they have intersections about every 30 miles with gas stations, fast food etc. and in between these there is absolutely nothing. We kept driving for a few miles and saw nowhere we could stop, so I finally decided we should just pull over on the side of the road. I had never had to change my bag on the side of the road before, and came to realize I was completely unprepared. I had no paper towels or washcloths in the car. We didn’t even have any napkins.

Luckily, I did have my suitcase containing my supplies and clothes, so I was able to improvise. I grabbed a T-shirt out of my suitcase and wet it with a bottle of water we (luckily) happened to have in the car. I stood outside of the car with the front and back doors open to hide me while I cleaned off and changed my bag, pants unzipped and all. It was embarrassing and nerve-wracking, to say the least, but I learned some important things from this experience.

Come Prepared

Always be over-prepared wherever you go. It doesn’t matter if you just changed your bag an hour ago and you think there is no way it will leak. It can happen anytime, anywhere. Have your supply bag and a change of clothes, of course, but also have some washcloths and water on hand. You never know when you might need them! I used to be very cavalier about bringing supplies with me everywhere, but once your bag leaks in public or in the car and you don’t have any way to change it, you will never forget your supplies again.

Remember, when you’re traveling you can’t just run home and jump in the shower to wash off and change. You need to be so prepared that you could change your bag on the side of the road if you have to (and you might). Having an ostomy can come with its surprise twists and turns, but if you come prepared I believe there are no limits to what you can do!

This story originally appeared on Miss Pistol.