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The Reality of Living with a Stoma

I had my radical cystectomy just over a year ago and physically, I have healed well. I had my first annual check-up, and all was good. So, why was I feeling so darn fed up?

A bag for life

I believe it was the cold realization that I would have this bag attached to me forever. Now, I knew right at the onset that I would have “a bag for life.” This was no surprise. So why was I feeling “depressed”? Yes, depressed - that’s what it was!

I prepared as much as I could

The fact is, I don’t think anything really prepares you for life with a stoma. I had read every article I could get my hands on. I had joined online communities that gave great support and information. I had spoken with other people who had gone through what I was about to and I felt that I’d prepared myself as much as I possibly could.

Day-to-day living with a stoma

The “thing” that I have found hardest to deal with is that I can never, ever forget that I have had cancer. The reminder is there every single day. Not just because of the 12 inch scar on my abdomen, not just the bag hanging from my belly, but by having to always be one step ahead.

Trying to stay one step ahead

Have I ordered all my ostomy supplies? Has my general practitioner authorized my prescription? Have I got enough of everything I need? Every other day going through the routine of removing the bag, cleaning the area, putting on a new bag. Taking an “emergency pack” containing all I need, should I need to change or “spring a leak”. This has to come with me EVERYWHERE I go. Watching my fluid level intake when I’m about to go out, and also whilst I’m out. Checking where the nearest toilets are. Did you know that there is an app for your phone that tells you where the nearest toilets are? No, neither did I, but I do now and it’s a godsend.

Accepting my new normal

The truth is, an ostomy doesn’t stop you from doing anything you did prior to having the surgery. (Apart from no heavy lifting, as we are very prone to getting hernias when we have a stoma).

I have had many operations over the last few years, mainly due to arthritis and joint problems. Over time, the scars fade and the joint heals, and you can pretty much forget it ever happened. Not so with a radical cystectomy for bladder cancer. What can take time, and it has for me, is accepting that my urostomy is forever, and all the time and care it takes to look after it. I knew I had to change my outlook as feeling sorry for myself was getting me nowhere.

Two important things to remember

This is me, this is my life, forever. But there are two important things to remember here.

Firstly, I have a life, a life that can be as fulfilling as I want to make it.

Secondly, I needed to change my mindset when bag change was due. So now I have started to incorporate “something nice” into my bag changing routine. Such as putting on a face mask before I change my bag. The time it takes to change the bag coincides with the length of time the mask needs to be left on for. Or put on your favorite tunes and sing along. Phone a friend using speakerphone whilst changing. Think of it as some “me time” rather than a chore.

With regards to supplies, I just think of it now as part of my monthly shopping. Something that has to be done.

My second chance at life

And it’s true, it does become “the new norm” because it has to. It’s just how we decide to view that “new norm”. For me, it’s given me a second chance. This “bag for life”, the bag that I had almost begun to hate, has actually saved my life!

Now that’s something I’m determined to be positive about from now on.

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