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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Anita Brown moderator author
    7 months ago

    Hi Andy

    I just wanted to share this video… this is me a year on…https://youtu.be/ff9oF0Ar9AA

    Hope you are feeling a little better today? Take care

  • Andy
    7 months ago

    Hi Anita, Yes it was taken out last Saturday and I am still in hospital in London. The operation was done robotically so I understand that my recovery should be much quicker. I am still feeling “shell shocked” at having a stoma, but I guess I will get used to it. It certainly helps to talk to others with the same problem…..many thanks.
    Andy

  • Anita Brown moderator author
    7 months ago

    Oh Wow Andy, firstly… well done for getting through a week, I swear I thought it was the worst thing I had ever done! I can still remember the pain when I moved.. we are all so different, I really wouldn’t worry about how long it takes you to recover Andy but you take as long as you need.
    There is a lot to get used to in those first few weeks, let alone dealing the emotional side of having your bladder out.. You WILL recover, let your body heal in its own time. I came out on day 5 however I was back in hospital with an infection 2 weeks later. I then decided that I Would do it my way, I knew my body and how I healed, so it took me much longer as well. I barely left the house unless it was to go to hospital appointments, oh and I did go to The Foo’s O2 gig. Everything was still new, still sore and all abit overwhelming… Please stay in touch and let me know how you are getting on, take care Anita

  • Andy
    7 months ago

    Anita, Having just read this post, I feel so much better; thank you very much.
    Best wishes
    Andy
    Guys Cancer Wing
    London

  • Anita Brown moderator author
    7 months ago

    Hi Andy,

    How are you? Have you also had your bladder out? I’m glad the article has helped you, it’s such a scary time isn’t it?

    Hugs

    Anita

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