Hello

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I have to choose between a stoma and a neobladder. I'd love to hear your thoughts or experiences.

  • Hi I had a neo bladder last year and I’m so glad i did. Speak to your urology team they will help you make your decision.  It’s a slow recovery but well worth it. 

  • Can you tell me why you chose neobladder rather than stoma?

  • Hi Perdita,Welcome to the group.I had already opted for a stoma which was just as well as Neo bladder wasn’t thought suitable for me.I had chronic bladder disease prior to cancer and a rarer type of cancer that was very aggressive.I haven’t found it difficult to adjust to a stoma.The stoma nurses were helpful.I had to be able to change the bag unaided before being discharged which wasn’t difficult.Once I was home it was easier to manage as I didn’t have drains,tubes and drip stands in the way.You soon get into a routine and it doesn’t take long to clean around the stoma and change the bag.I still wear the same type of clothes as before but have added tunic tops as they are comfy.I can empty the bag easily when I’m out.For me the best thing is being able to sleep at night without having to get up for the loo.Happy to answer any questions you may have.I hope you find the group helpful.Love Jane 

  • Thanks so much for your reply. That was really helpful and I'm pleased to hear that you have had a positive experience with your stoma.

  • Hi  

    I too live with a urostomy and would echo what Jane has said. I didn’t have the option of a neo bladder as I needed a different surgery taking more than the bladder. I’ve lived with my urostomy for almost 4 years and find it very straightforward to manage. And I love not having to get up in the night to go to the loo! 

    I think you’ll find people with a neobladder happy with that, and people with a urostomy happy with their choice, so if you do have the option it might be down to personal preference for you. You’ll be able to see the different experiences in the group, and you’ll probably see pros and cons for each option. 

    Sarah xx


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  • Thanks for your reply. Good to have another positive report for the stoma option and it sounds like you are managing really well. The problem is I think I may only get positive replies on this forum as who is going to post a negative one? I am still so undecided.

  • It’s not all a bundle of laughs but I choose to be positive about something which saved my life, as it has kept me here. There are negatives of having a stoma, as I’m sure there might be about having a neobladder. I just don’t focus on them, but I have read negative posts in the community before about stomas. Not everyone is happy to have them. 

    Sarah xx


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  • Hi Perdita, to be honest I’d never heard of a neobladder before I’d seen my consultant . I was told I had bladder cancer and it needed removing so all I had in my mind was that I was going to have a “bag for life” excuse the pun. My consultant and the lovely specialist nurse talked me through it and said I was the  iideal candidate for a neobladder as not everyone is. However before I went down for surgery I was measured up for a stoma just incase there was any kind of complications. 
    They do take a lot away but I thought they might aswell take it all away just incase there was anything else looming in the organs close to my bladder, at 57 and all my childbearing years gone too. I was concerned about the shortening of the vagina however there was nothing to be worried about as all is fine and dandy if you know what I mean Wink

    To be honest everyone that have made either choice all seem to be coping well. I’m glad I had the neobladder as my body still looks normal and functions the same and I suppose if I had to have the stoma I’d still have to adjust it’s a case of what suits and if you have those options. 
    Hope whatever you choose goes well for you. It’s a scary time and a year down the line I’m just so thankful to all that were and still are involved in my journey. I can’t thank my urology consultant and team enough for what they have done for me and the impact they e had on my life. Forever grateful xx

  • Hi Perdita,A stoma is a reminder of the surgery and if you are body conscious then you might find it harder to deal with than a Neo bladder.There is always the possibility of a leak with a stoma.I have been lucky and only had a handful mostly in the early days when the stoma was changing shape and shrinking.Post op complications can occur with both options so it’s not always plain sailing.Jane x

  • Hi there and thanks for your comments. I'm 73 so not body conscious any more. I think I definitely would have been choosing the neobladder if I had been younger. Now I am more worried about not being able to retrain my muscles to pee a different way, so stoma seems easier. Both options seem to have their advantages and disadvantages and I realise that it's not always plain sailing either way. I am no nearer to making a decision though.