Getting my head around travel with a stoma

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by Rachel Green

As a newbie to life with an ileostomy (surgery October 2016) I’ve found a hundred and one different things to get my head around. Things in life that used to be automatic just take a little more thought. I guess it takes a while to reinvent habits of a lifetime. Some of the things we might have taken for granted like getting a train, jumping in the car, commuting to work, booking a holiday, going for a walk, a day trip out, don’t seem as straight forward at first. They haven’t for me at least.

Before surgery I was unwell for a year and pretty much lived life on a postage stamp, housebound much of the time. What followed surgery and not being tied to the bathroom was something of a profound experience. I was so excited at my newly found liberation I went up to London to see a show just three weeks after surgery. Looking back I’m glad I did, although I’m not sure all the wine was such a good idea. There’s something to be said for ripping the band-aid off and getting on with it.

That might sound like it was a breeze but it wasn’t entirely. I was very apprehensive but determined. I had tickets for Bowie’s Lazarus that I’d bought before ‘sub-total colectomy’ was even in my vocabulary and didn’t want to miss out. I constantly checked my bag and sitting through a 2-hour show without an interval was a test of both my nerves and my newly found bag fitting skills. But it was worth it. I did something that felt normal, I went with my sister who I trusted to support me (and lead me astray) and it was an incredibly restorative experience.

Looking back on it I realize how naïve I was over several aspects of that evening (did I mention the wine?) but still, nothing bad happened, I saw the (super, amazingly brilliant) show and I cried pretty much all the way through. I wasn’t ready for such a wave of emotions (some Bowie related) as what I was doing had been previously unthinkable. What a treat.

Why am I telling you all this? Well I was asked to write something about travel as someone new to an ostomy. The first thing that came to mind was a long haul flight and an exotic holiday but upon reflection when you’ve been housebound for months just stepping outside the front door feels like travel. That trip to London was symbolic and very important in gaining my confidence in going out and rebuilding my life.

I’ve not booked myself an exotic holiday yet and I don’t feel in any immediate hurry to do so although I do have some overseas plans emerging for later this year. My approach so far has been to enjoy getting out and about locally and a little further afield, building my confidence in managing the variables of ostomy life. I generally travel alone so being confident and independent in my understanding of what it is to travel/fly with an ileostomy is very important to me.

To date beyond my commute, I’ve had a weekend away at the coast, been on an overnight business trip, driven the 200 miles to visit my parents a couple of times and have started cycling and walking. These were things that were mountainous challenges before surgery and now are so much easier. I went out for a walk, sometime in December and it struck me after about a mile that I had just walked out of the house without a thought or panic about how far the next bathroom stop might be. Now that was an exciting moment!

Is perhaps worth saying that I do have to keep reminding myself that I can just go do s totally possible to do anything. My life was dictated by bowel disease and trips to the bathroom for over 16 years and the list of places I can now travel to is ever growing.

I’d be lying if I said the thought of flying and being overseas doesn’t fill me with a bit of apprehension. But, as my Dad says, ‘a problem managed is no longer a problem’. That sticks with me and makes me look at the things I see as barriers and question myself as to how am I going to manage them. The key for me is to be resourceful, to make sure I have sufficient knowledge to be able to manage myself independently and to have resources available for where I have knowledge or experience gaps. You’re here and reading this so you are already resourceful. I intend to become more and more so, integrating life with an ileostomy into my new normal and who knows, my next travel blog might just be written on a sunny beach!

 meplus blog Rachel travel collage

That trip, three weeks post surgery!