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The Reality of Living with a Stoma

So, 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!

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” scar on my abdomen, not just the bag hanging from my belly, but by having to always be one step ahead.

Have I ordered all my Ostomy supplies? Has my GP authorised 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 the “new norm”

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 leaving 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.

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.

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

View Comments (4)
  • Shirley Norris moderator author
    2 months ago

    Hi there SusanMyles, I’m glad to hear that you are now back home. For me coming home to my comfortable and familiar surroundings, plus my own bed was a great feeling of triumph. But I can completely understand how overwhelming everything feels right now. You have been through one hell of a lot, both physically and emotionally. It takes time for “everything” to settle down and getting used to your new little addition, your stoma.
    But I promise it does get much better.
    As the swelling on your tummy goes down, and your stoma takes shape things do become “more normal”.
    But go easy on yourself, I know I thought once my surgery was done, that would be it! But there is lots of healing to be done. So take one day at a time and do you know, one day it all just clicks into place.
    Is there anything in particular that you are finding difficult at the moment that I could help you with? Please don’t hesitate to contact us, we are always here to support you. Please let me know when/if you decide to give your stoma a name. I always find it interesting to hear what others have called theirs. Take care of yourself and I wish you great day! Shirley- bladdercancer.net team

  • SusanMyles
    2 months ago

    Thank you so very much for sharing valuable information. I’m a 59 year old woman & 12 days post RC. I’m still struggling with getting my head around everything at the moment, but your posts have answered a lot of my questions & are helping me to shore up courage for taking me & my stoma home in a couple of days (no name for stoma yet – still trying to consider it friend not foe).

  • Shirley Norris moderator author
    2 months ago

    Hi SusanMyles, I’m glad to hear that you found my article helpful.
    I understand completely how daunting everything seems in the beginning. You are still very early days. But it’s good that you are reading up on hints and tips etc. For me the advice and support that I got from sites like this was invaluable and I’m forever grateful. But let me tell you one last thing. Life with a stoma is ok, a stoma needn’t stop you from doing anything you did before your surgery. (With the exception of lifting). I’ve had saunas, been swimming, on overnight trains, flown many times, been an “extra” in a Bollywood movie, dined in the sky on a cable car. In fact since getting my stoma I’m more adventurous and really appreciate my new lease of life that my little stoma “Winnie” has given me. Please do keep in touch and let me know if you decide on a name, I’d be very interested to hear what you call it. And remember that we are always here to support you. Wishing you a great day! Shirley

  • SusanMyles
    2 months ago

    Thank you, Shirley, for your very positive advice. I’m home almost a week now and finding it a bit overwhelming, but just reading how others are managing is helping enormously. Still name for stoma. Regards Susan.

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