A backpack with highlighted items emerging from it, including a clothespin, water bottle, ostomy bag, and spare clothes.

Tips for New Ostomates: What I Wish I Knew

Last updated: September 2022

As I write this, I am 4 months away from my 5th "stomaversary," the anniversary of my stomas and a key milestone in my prognosis.

As I reach this milestone, I reflect not only on my bladder cancer journey but also on my life as an ostomate. Something that does not define me but indeed is a part of my daily life.

Along the way, I have learned lots of things that would have been great to know before my surgery which I would like to share. These would be useful for anyone facing ostomy creation surgery or, indeed, are a new ostomate.

My grab bag

I use a diaper changing mat to place on top of my toilet seat. This gives me a flat, clean surface to change on, which I can easily wipe clean. I also have a travel, portable diaper changing mat that I keep in my "grab bag."

I call it my grab bag, and it's actually a baby diaper bag. It has lots of pockets and is waterproof inside; plus can be wiped clean. In this, I keep spare clothes, spare ostomy supplies, a small bottle of water to clean my stoma if no access to water, a portable diaper changing mat, and wet wipes. I take this bag everywhere with me. My stoma, due to some complications, is subject to leaks. Once you get used to your stoma, you could just have this bag in the car rather than carrying it with you all the time.

At home and also in my spare bag, I keep a clothespin. It allows you to pin up the bottom of your shirt to the top and keeps it out of the way while you change your bag.

At home and on the road

I have a diaper pail in my bathroom. It gives you a clean, hygienic, odor-free way of disposing of used ostomy bags. It also means you can empty it say, once a week, avoiding the hassle of constantly changing the rubbish.

I use a washable bed pad mainly if staying in a hotel, Airbnb, or with friends or family, mostly as a precautionary method to protect the bedding. You can place it under the sheet or on top. It would absorb any moisture if you had a leak and draw it away from your body. I use it at home, too, if I have a period of issues with my urostomy; I occasionally have some leak issues, which most people don't need to worry about.

You never know when you will be caught in traffic unexpectedly. I keep a spare night bag in my glovebox so I can empty my standard ostomy bag into it until I have a chance to get to a restroom.

If you live or take a vacation in a hot country, there may be occasions when you need to have your supplies with you out in the heat, like a day at the beach or at the pool. Ostomy products can be affected by extreme heat, and a cooler travel case is usually meant to keep insulin cool, but it is enough space for a spare bag that can be kept cool.

Tips for new ostomates

I would never say to you that life as an ostomate is an easy one. It can come with its challenges, but you can live a very good life as an ostomate. There are advancements and new developments in ostomy products all the time. Products to support are constantly evolving.

The biggest support I have received along the way has been from fellow ostomates sharing their tricks and tips. There is a great ostomate community that is constantly growing. Never feel alone. Reach out to others if you need some support to get an ostomy solution that works for you.

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