Let's Cease Using the Word "Bag!"

Last updated: September 2022

I'm almost six years into this journey now, and I cannot count the number of times that I see people post online how much they hate the "bag" and their life post-cystectomy. They complain that they have difficulty adjusting to the new routine, anatomy, and so on.

Depression is kind of a given. After all, we are talking about bladder cancer. No matter what kind of cancer, I would be more concerned about someone's mental well-being if they didn't experience depression at some point.

However, hating your life or your body and continuously having a hard time adjusting is a whole different ballgame.

It certainly isn't easy

Now, I'm not saying that it's easy or there's no learning curve. There most definitely is! However, at what point do you transition to acceptance?

Yes, some people have justifications for struggling as they may have had severe or unforeseen complications surgically or in terms of their peristomal skin care. In those cases, by all means, stomp your feet and complain a bit.

Ahead of the curve

Admittedly, I was ahead of the curve with diversions when I was diagnosed. I spent nearly a decade working in a pediatric GI division at my local children's hospital. I worked with a team specializing in very specific, complex, and rare diagnoses. Most of which had ostomies. I had begun advocating for those patients and their families before I received my diagnosis.

Smack dab in the middle of my time working there, and I received my bladder cancer diagnosis. Sitting in the doctor's office and receiving the original care plan, I was far more upset at hearing that I was going to need chemotherapy than I was about needing an ostomy.

I knew that I could have a long, good quality of life with an ostomy. Chemo was subjecting myself to poison.

I never liked it

Nonetheless, I spent a lot of time crying in those first weeks while I waited for my surgery date. Yet, at the same time, I had made up my mind that bladder cancer was not going to win.

Having worked where I did, I knew that the appropriate terms for what I was getting were ostomy, pouch, and appliance. I also knew that many people just simply called it a "bag."

I almost instinctively had a strong dislike for that term, "bag." I never liked it, and I rarely slip and say it.

In the appropriate terms, finding acceptance

In some ways, talking about my situation in the appropriate terms, I believe, is what helped me accept the thing that constantly is hanging from the right side of my abdomen.

You are getting a stoma placement. You have a pouch. You are living with an ostomy appliance. These are life-saving procedures.

We have a medical device. It is absolutely no different than a diabetic living with a continuous glucose monitoring (CGM) device. It is medically similar to a cardiac patient having a pacemaker.

It is a medical measure that prolongs your life and allows you to live your life.

Switch, alter, and shift

Switch your perspective. Altering your language can, in many cases, help get you on the path to better acceptance. Adjusting to your new medically-focused lifestyle will take some time. You will get there.

Now, this isn't a fairy tale, Harry Potter or the Wizard of Oz. Making this shift will not miraculously give you a happily ever after. No one is going to swish and flick the challenges away. There is absolutely no clicking your heels and reciting "there's no place like home" three times to get you back to your pre-bladder-cancer self.

However, it will get you on the right path. You may need some additional support and resources along the way. There are a ton of resources out there.

In part, that's what we're here for, after all! Lean on us, but take some responsibility and control in changing your perspective or connecting with the right resources. While you're at it. Stop using the word "bag" when referring to your urostomy!

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