The “New Normal”: Life with a Stoma

I was diagnosed with a high grade, aggressive bladder tumor. This was totally unexpected, although I had known for quite some time that something “wasn’t quite right”. What it was, I had no idea. However, a bladder cancer diagnosis was the last thing I expected.

My treatment journey

I underwent two TURBT’s (transurethral resection of bladder tumor). Unfortunately, they were unsuccessful as my tumor was fast-growing. So a Radical Cystectomy was recommended.

I underwent the surgery to remove my bladder on January 30th, 2017. That was the day that my “stoma” was born. I named my stoma “Winnie”. How or why I came to name “her” that? See, I had already decided my stoma was female. Crazy, I know, but giving my stoma a more “familiar” name helped me deal with this transition.

After surgery

On awakening after surgery, I was so conscious of “this bag” stuck to my abdomen. I looked down at my stomach and wanted to cry. I had a massive incision from above my navel, right down to the pubic bone. I had tubes, here, there and everywhere. From my stoma, in my neck, up my nose. I was quite frankly terrified.

Over the next several days, each of these tubes was removed. As each tube was taken out, I began to feel a little easier. But I still had that “darned bag” stuck to me and that was never going to change.

What’s this “new normal?”

This was when my healthcare team started to talk about the “new normal”. Was this phrase meant to make me feel better? “New normal”? For me, there didn’t seem anything normal about it!

I didn’t know anyone else that had undergone this surgery; I didn’t know of anyone that walked around with “a bag” stuck to their stomach. How could this ever be normal?

How could this ever be normal?

The first few days and weeks were not easy, I’m not going to lie. My stomach was swollen, I suffered numerous “leaks”. I was terrified of going out, in case I had yet another leak. My bowels didn’t work properly, and I suffered from terrible gas and constipation. My appetite wasn’t great either.

But gradually, things started to settle down. My scar began to heal, the swelling on my abdomen subsided, my bowels started to behave, and the gas I had been suffering from stopped.

Yes, I still had my stoma, “my Winnie,” and the bag would be attached to me every day forever.

My “new normal” happened

But today, I’m sitting here almost 23 months later, and I’ve suddenly realized this is my “new normal”. No longer am I consumed by worry about the possibility of my bag “leaking”. No longer do I worry that “my bag” is obvious to others (it isn’t, by the way). No longer do I worry. This is it, this is the “new norm” that everyone told me about. When did it happen? I’m not really sure, it just did. Looking after my little stoma “Winnie” is no big deal anymore; it’s just as normal a part of my life as cleaning my teeth. And, do you know - life is good, life is “normal,” and I’m enjoying every minute of it!