Ostomate on the Go: The Necessities
For those who have gone through bladder cancer, had a radical cystectomy, and either chosen or ended up with a urostomy - it may feel like you are tied down. How on earth do you go about a normal day outside of the house? How do you handle bathrooms, possible leaks, and the myriad of hiccups that can come with “bag life?" Out of necessity and stubbornness, I have become a bit of a pro as far as being an active ostomate on the go.
Preparation is key
The best way to alleviate stress and worry when it comes to dealing with an ostomy away from home is to be prepared. By having a few necessities always on hand, you can be confident no matter what situation you find yourself in. One thing I have always done, and *knock on wood* I haven't needed yet, is keep a spare change of clothes. I always keep an extra pair of underwear, leggings, and a t-shirt in the trunk of my car. At work, I have again some underwear, basic black slacks, and an easy blouse. If a leak is going to happen I want the ability to have clean dry clothes to change into to either get home or continue my day.
Designated for active ostomates
More important than a change of clothes has actually been my “go-bag.” This is a small pouch that fits in my purse and goes everywhere with me. I have iterations of this bag stashed in multiple places: at work, in my guest bathroom, in my gym bag. The only place I don’t keep it is in my car, which I will explain momentarily.
So, what is a go-bag? It is just a collection of essentials that I have with me in case I ever need to do a bag change. Maybe it's a leak, maybe it's itching like crazy. I am also paranoid that there will be a doctor’s visit where I will need to remove my bag (it has happened before). I’m pretty sure every ostomate has their own version of a go-bag, but for those getting started here are my must-haves.
- Two precut ostomy bags, preferably one-piece units for ease. This is why you can’t keep a go-bag in your car - ostomy bag adhesive will quite literally melt in a hot car!
- A few trash bags. The ones that come with my ostomy bag order are perfect because you can fold them and they are opaque.
- Adhesive remover wipes.
- Barrier or skin prep wipes.
- Hand sanitizer - you must have clean hands when doing a change.
Extras to consider
I also have a few extras that I consider essential, but some folks might not want to include them. I personally keep a travel-size baggie of Cetaphil wipes. It is tiny and the wipes are perfect for cleansing the skin during a bag change.
Contents informed by the past
Thanks to a few harrowing ER visits and doctor’s appointments I now keep the adaptor needed to hook Coloplast bags to pretty much any external drainage system, ie. leg bags, foley bags, night drains. And lastly, I keep a leg bag. The Conveen active leg bags come in their own sterile pouch and are about the size of a credit card before opening. I love these as insurance policies if I’m ever in a situation where I cannot get to a bathroom or find any way to empty my bag. These leg bags hold the equivalent of a second ostomy bag and are easy to either wear or empty into and toss.
Better safe than sorry!
All together my go-bag is the size of a small makeup bag even when full. This bag fits perfectly in my tiniest purse or clutch. I have only needed to crack open my spare supplies once in my two years as an ostomate. The confidence I have just knowing that my essentials are available at any time has been invaluable. Just make sure you swap out these supplies periodically so they do not expire or go bad!
Do you have a bag of your necessities as an ostomate? Let us know in the comments what you keep in yours!
Connect with other ostomates and urinary diversion members!
How long did you wait before telling others about your diagnosis?