Getting to Know My Stoma

Last updated: July 2018

So I've had bladder cancer and with it came a Radical Cystectomy. The removal of my bladder along with nearby organs such as appendix, ureters, etc. and I now have my little rosebud stoma, whom I have lovingly named "Winnie".

Coming to terms with my stoma

Now me and "Winnie" are gonna have to learn to get along. After all she's going to be by my side literally, for the rest of my life. This realization was quite daunting. I've had other operations in the past, scars heal, and eventually you forget about them. But I was never going to be able to forget I'd had bladder cancer. Yes, the scar from above my navel down to the pubic bone may fade, but I'm always going to have my stoma, my "Winnie". A constant daily reminder that I'd had cancer! A constant reminder of the fear that I endured, the upset that it brought to my family and close friends.

I would never be able to forget my cancer, having to check constantly that my "bag" isn't too full. Checking that the "bag" is secure, checking that I have all of my emergency supplies with me, just in case I "sprung a leak". Seeking out the nearest restrooms everywhere I went, just in case I quickly needed "to go". Having to peel the glued on bag off every other day, meticulously clean the area and replace. Checking I had enough supplies available for each month. Checking, checking, checking! Never being fully able to relax. Always careful about how much I drank, especially before traveling anywhere.

Don't give up

Now it would have been so easy to "give in" and not go out. After all it seemed so much like hard work preparing everything "I may need". Also the thought of "Winnie" springing a leak whilst out somewhere absolutely terrified me. BUT, I was going to have to learn to trust my little stoma. Get to know her, learn to understand her needs. This, not unlike any other relationship would take a little time.

Developing a routine

Over the coming weeks I got to understand my stoma's needs. She didn't like anything too fizzy as this would make my tummy ache and my bag fill up very quickly. A changing routine was in place, with everything I needed to hand and all in a specific order in a designated drawer. My emergency pack was now all packed discreetly in a medium sized toiletry bag and was always ready "to go". My prescription for all my "bags" and various other supporting items was now on a repeat order. With one click all items would be reordered and delivered direct to my door.

Learning to trust

I had learnt I could trust "Winnie", as long as I looked after her properly she looked after me. Yes, she is a daily constant reminder of what I've been through, yes on the odd occasion it does get me down. But overall Winnie has come to be a constant reminder that I survived! A reminder that life is for living and that for every day I share with my stoma, my "Winnie" is indeed a blessing. So I'm feeling quite confident that me and Winnie will get along just fine, we have to, after all we are stuck with each other forever.

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