Traveling With An Ileostomy

Over my years of illness with Crohn’s colitis, traveling became more and more difficult. I’ll never forget what I thought at the time was my last overseas flight. I had recovered from a two-week hospital stay, and though I was still on Prednisone, I was feeling relatively good and I decided to visit a dear friend in Italy. The flight home convinced me that I was done with international travel. First, I almost missed my flight because I was stuck in the bathroom when they were boarding. I made it onto the flight, but over the course of it, which unfortunately involved two transfers, my energy level plummeted and I was feeling worse and worse. By the time I got home, I felt like I could just go lay in my coffin and die. And it didn’t stop there. I experienced a headache every single day for one month after that flight, and I flared, and it took me a couple of months to feel like I had recovered. Not worth it! And I took one last look at my passport, with stamps in India and Germany and Panama, and tucked it away into the drawer full of memories and tokens of my past life. Cross one more thing off the list.

After recovering from Ileostomy surgery, I was anxious to find out what it would be like to travel. Although I have not yet traveled overseas, I am now convinced that it will be no problem, and I can’t wait to visit places I love and places that are new to me.

What I have done is traveled domestically, in a plane and otherwise. I had read some things about what to watch out for when flying, but so far I haven’t had any technical difficulties. For example, changes in air pressure don’t appear to affect my pouch at all, as I had read somewhere. The one thing I did experience several times is airport security searching my emergency bag. I had already removed the scissors, but the first time I went through security they searched me and they told me it was because my ostomy powder was a liquid and should have been in my liquids bag. The second time I flew, I had neither powder or paste or scissors in my emergency bag, and I still got searched. I’m convinced that the items in my emergency bag are just unfamiliar to the security people; they are strangely shaped objects that suggest further investigation might be prudent. In both cases, once the security person actually opened my emergency bag and saw what it was, they were very kind and quick to send me on my way.

Whenever I travel, I calculate how many days I will be gone, I plan on a worse-case scenario of having to change my pouch every other day, and then I throw in a few extra sets of supplies in on top of that. I keep some in my carry-on, of course. I know how many paper towels I need per change, and I usually pack what I need but not extra, because if I really go through my supplies like that I can always go to the store and get more paper towels. I pre-cut all of my flanges for convenience. And that’s it. Oh yeah, I double-check and triple-check and quadruple-check that I’m not forgetting these things. I’m paranoid that I’ll leave the bag of supplies out until the last minute and then forget it.

When I went on a roadtrip out west, camping and hiking etc., I essentially packed the same way. Since we were doing more car camping than backcountry, I also had a special little dishtub that I could fill with water so that if I had a particularly messy change I had some extra water at hand. Once or twice over the course of two and a half weeks, I succumbed to the desire to change in a real bathroom, and we stayed in a hotel instead of camping. Why not? I thought. It’s my vacation, and I don’t have to prove anything to anybody about how tough I am. I really enjoyed those few times in the hotel, even if in general I prefer to be in the woods. I was lucky throughout my trip in finding private campsites where I could just change at the picnic table. I would do it early in the morning when few were up. However, if you’re car camping you can always bring a second tent to have a private space to change your pouch. I might do that this summer when we go to the Telluride Bluegrass Festival because there will be a lot of people around at all hours.

While I would say that having an ileostomy is similar to having Crohn’s in the sense that there’s nothing like having your own bathroom, the feeling in not nearly so powerful to warrant actually staying home. I would never let the minor inconveniences and risks of changing my pouch in unfamiliar places keep me from traveling and doing whatever I want. Cheers to a life on the move!

(In August/September 2009, I traveled to China and Tibet, and had no difficulties with airport security or getting around either country.  If you want to read my posts from the road, here is a link to one of my first posts related to the trip, or you can go to August or September and see the “China and Tibet Travelogue” posts:

http://lifewithapouch.wordpress.com/2009/08/25/china-tibet-travelogue-1/

)