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Trying to reassure husband before radical cystectomy

Daddypoos
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Hi, husband is having radical cystectomy with prostate removal and removal of lymph in area, in 2 days time.   As everyone knows this is the point where we are having a few panic incidents , been doing well reassuring him, howeve he keeps coming back to the fact the nurse told him Friday he will be marked up for both bags in case.   He has now got it into his head that because they use a bit of bowel for the stoma, that he will end up with both bags.

obviously I’m doing my best, however I can’t reassure him, that even if he does they can be reversed.

so my question is, firstly what is the percentage of cases that have to have both bags , secondly how many of these are reversed and after what time period and third question is how many are left permanently with 2 bags.

hope you can help, so I can show him and reassure him.   Thanks for your time 

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    Hello   , I'm just sending you this as the nurses won't be replying until office hours .I'm like you , need to know everything and be prepared for anything . I got a lot of info from a bladder cancer charity .they sent a lot of literature, very helpful .

    My hubby had the same op . for muscle invasive Bladder cancer 18 months ago.  He has a permanent urostomy to substitute for his bladder . He can't really recall much of the stay in hospital,  but was glad to get home. He's 75 and had a previous stroke which had affected his memory and cognitive function,  so it's all down to me to keep asking for answers from staff . 

    My nephew had a colostomy for a perforated bowel 4 years ago,   his cancer was treated with immunotherapy and has gone completely.....he is just going through the preparation for a reversal. 

    It's all scary stuff , with a lot of new things to learn,  but  put your trust in the surgeons , and especially the stoma nurses .This waiting phase is really awful isn't it ? But we're thankful to have got rid of the cancer and the problems it was causing . 

    I hope all goes well on Friday and on into the future, 

    Zillah 

  • Hello and thank you for posting.

    I am afraid I do not know the percentage of people who have stomas after a cystectomy, as these aren't the sort of statistics that the Office of National Statistics or Cancer Research UK collects. The specialist team caring for your husband may be able to say what the likelihood of him having stomas is.

    Waiting for surgery, tests, and treatments can be a challenging time. Taking each day, and making sure you have support for yourself too is important.

    It may be helpful to make another post in the 'living with cancer' category to hear from others who have a similar experience.

    Do speak to your husband's hospital team or specialist nurse (CNS) if you need other information about his surgery. I hope it all goes well and do call us if you want to talk things through.  The number to ring is Freephone 0808 800 4040 and the lines are open mon-fri 9-5. 

    Sarah.

  • Offline in reply to Daddypoos

    Good morning, 

    Thinking of you and hoping all is going well. 

  • Offline in reply to Zillah

    Thankyou, he’s in a lot of plain and thankfully only has the one stoma, the ward is a bit of a worry, but we are now on the right side of op x

  • Offline in reply to Daddypoos

    That's so good to hear .They will get on top the pain as long as he owns up to it ! Safely through the op. and now on the way to recovery.

    The wards can be a problem ....noisy and full of activity .Some of the patients may have dementia as well. It's a shock if you're not used to it .  He'll pal up with someone and it will be fine .

    Remember to rest up while you can ,  as you'll be busy when he gets home. 

    Zillah

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