Living with a Stoma: A Year Later!

Wow, it's been nearly a whole year since I had the operation and lost my bladder. What can I say? It has changed my life so much, and for the better.

For anyone who is facing a cystectomy: please don't worry too much, you have got this! It was one of the worst things I had experienced in my life, having never really had a "life-changing" operation before. I don't say that to scare or frighten you; I say it because it's true.

Taking time to recover

I had never felt pain like that before. It took me a while to fully recover. The professionals say it takes 2-3 months to recover, but I would say add a little bit more onto that. Physically, your body needs time to heal and to repair itself, as well as getting used to your new normal. Psychologically, it could take you a few months to get used your stoma and bag. You will have teething problems in the beginning: your bag will leak, you may struggle with changing it, you may feel bitter that you have lost your bladder.

There is no normal response to losing your bladder. Some people cope better than others, and it also depends on whether you have complications from your operation. Hang in there though - it really does get better.

You will forget as time goes on

A year on... what little tips can I share with you? Yes, it IS a life-changing operation, yes, it will hurt; however, you will forget the pain, and you will forget the emotional side of being bladder-free. I have found that if you mention you don't have a bladder, at a gig or concert with security guards, those security guards won't embarrass you by pulling out all your stoma care out of your bag. They are more frightened than anything, and I think embarrassed too, which makes me laugh, I would love one of them to pull out my HUGE knickers!

I now realize that when I drive a long distance, it important to carry an empty bottle with me, in case I can't get to a toilet. Also, if I'm going out far from my house, I will take my bag with my supplies with me "just in case". I have spoken with others who simply attach a night bag if they aren't driving and traveling.

Pushing the envelope

I also think I'm getting a wee bit too cocky now and pushing my luck, as I leave my bag to fill right up before I empty it. It's almost like a Russian Roulette game but with wee. If I don't go far from home, I don't take my supply bag.

My husband says I do have a "thing" that I do, and it's almost subconscious these days. I could be standing anywhere, and I will run my hand over my bag, to check its fullness. I find you can gauge if you need to run and find a loo.

Innocent curiosity from others

People are very curious about it, too, and I have shown most of my friends "Sally". They are all impressed with how she looks and how neat and tidy she is. I have also found that children think it is hilarious! My sons' stepchildren are 3 and 6 years old. They are still at that stage where they follow you about all the time, just in case you are doing something a lot more exciting than they are. They followed me upstairs and burst into the bathroom while I was "mid-empty-mode".

I carried on, as there really wasn't anything else I could do, although I think I tried squeezing my "bladder" and holding the pee. Obviously, this didn't happen. I put my bag away and washed my hands. We all walked out of the bathroom, and the 6-year-old said, "I could see your willy". I burst out laughing, quickly explaining that I didn't have a "willy". I then explained in very simple words why. He understood, and I showed him my bag. Now, when I have to go and empty my "bag" he doesn't say anything. I think children are more accepting than adults.

For example, my son, who is 24, has an issue when I leave my night bag in the bath until after my first cup of coffee in the morning. He won't touch it or move it; he covers it with a hand towel, and pulls the shower curtain closed?! I yell at him; I say that it's "only pee for goodness sake". He can't deal with it. Very strange, I'm sure that psychologists would say that there is something deep and meaningful in that.

How far I have come

I can also pee standing up! Come on, ladies, haven't we ALL wanted to do that at some point in our lives? And without having any nettles sting our bottoms as we squat for a pee? I can pretend I'm looking at the beautiful countryside - oh, it is fabulous. (I will let you know if I can write my name in the snow later in the year).

The most amazing thing about being a year on? I AM PAIN-FREE and living my life, making those memories and enjoying it so very much. When I think back to where I was this time last year, on the sofa and on a morphine-based painkiller, it is so very wonderful to know how far I have come.