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Thread: Bad and Good News!

  1. #1

    Default Bad and Good News!

    Hi all,

    I had my VDU Bladder Screening at New Cross Hospital, Wolverhampton on Tuesday.

    The bad news is that the nerves that stimulate function in my bladder are either dead, or severely damaged.

    This is causing my bladder to stretch further and further, which is why when I sit or stand the urine just gushes out.

    An average human bladder should hold 400-500ml and the signal to empty one's bladder should come well before one's bladder is full. They filled my bladder to 800ml and there was still no signal to empty my bladder, nor did the bladder properly fill, so it didn't leak one drop! The consultant said that it would take a lot more than 800ml to fill my bladder, but it would be counter productive to do so.

    He said that because I do not get a "need to pee" signal, my bladder is stretching bigger and bigger, and it is acting like a snapped elastic band or balloon, where it contracts at such a rate that the pee is pushed out by force.

    He also said that if they continue to leave my bladder without treatment, it will continue to stretch and stretch bigger and bigger until it actually ruptures.

    The Good news?

    The Consultant has suggested a "permanent" urethra catheter with a "tap" so that I can empty my bladder frequently on demand, in the hopes of getting it to shrink back to normal size, but I would still continue to need said catheter as my nerves are not telling me when my bladder is full, so it would stretch all over again, should I stop using it.

    The catheter would be fitted at home by my continence team, and would require changing every 4-6 weeks.

    This is REALLY good news for me, because he said I would no longer have to wear the Comfort Super pads! (Which I am currently soaking and leaking out the sides!) Sorry guys, not what you want to hear on such a forum, but it would mean the world to me!

    So, although I am very upset that I am most probably going to be incontinent for the rest of my years, (unless significant treatment to my DDD fixes it) I have good news via a solution to my problem!

    Thank you for following my story.

  2. #2

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    I'm sorry to hear that you are having those problems but I'm glad to hear that there is light at the end of the tunnel. and given the forum, if you can get out of the pads and that will make you happy, then go for it! It shouldn't be all about diapers and pads here but supporting our fellow persons especially if they can get rid of something they want to. Best of luck and I hope all goes well for you.

  3. #3

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    I'm very sorry you are having these problems. I had to catheterize myself after back surgery. It lasted for more than a month and I hated it. Of course, I like wearing diapers, so if you don't, I can understand wanting to be from them. The biggest concern I had to deal with was infection. I never got a UTI because I was very careful keeping things sterile.

    I hope this is a good trade off for you. If you get tired of the catheter, would there be a surgical procedure that would make you permanently IC, but at least able to void your bladder?

  4. #4

    Default Re: Bad and Good News!



    Quote Originally Posted by dogboy View Post
    I'm very sorry you are having these problems. I had to catheterize myself after back surgery. It lasted for more than a month and I hated it. Of course, I like wearing diapers, so if you don't, I can understand wanting to be from them. The biggest concern I had to deal with was infection. I never got a UTI because I was very careful keeping things sterile.

    I hope this is a good trade off for you. If you get tired of the catheter, would there be a surgical procedure that would make you permanently IC, but at least able to void your bladder?
    I don't know dogboy, my uro-consultant suggested the "pacemaker" type device that would stimulate the nerves, but this was before we found out they were either dead or severely damaged.

    I'm OK with the idea of a permanently fitted catheter, it was the idea of constantly "self-cath'ing" that frightened me, as I don't think I would cope with that, plus there is the fact that Si would have to do it for me, and I don't think he would like that very much as he is highly adverse to doing things that hurt me....

    A "permanently" (4-6 week changes) fitted catheter sounds good to me!

  5. #5

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    Quote Originally Posted by CaptainVimes View Post
    I don't know dogboy, my uro-consultant suggested the "pacemaker" type device that would stimulate the nerves, but this was before we found out they were either dead or severely damaged.

    I'm OK with the idea of a permanently fitted catheter, it was the idea of constantly "self-cath'ing" that frightened me, as I don't think I would cope with that, plus there is the fact that Si would have to do it for me, and I don't think he would like that very much as he is highly adverse to doing things that hurt me....

    A "permanently" (4-6 week changes) fitted catheter sounds good to me!
    I hope this works well for you. I guess you'll have to keep us informed, because there will be a number of us who care. We're here for each other. Yes, I hated cathing myself, and I had to do it four times a day. It certainly wasn't any fun. In addition, since the nerves which controlled voiding didn't work, neither did the ones governing sexual stimulation. I was very unhappy, until that day arrived that I suddenly felt I could "go" to the bathroom. It didn't take me long to try the other. I was very happy to discover that that worked as well.

    Life can throw some very difficult situations at us. It sounds like you have your share. Good luck with all of this.

  6. #6

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    This sounds like the perfect solution for you. I really hope it works well.

  7. #7

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    I used an indwelling catheter on and off for many years, changing them myself when necessary. The most important thing is that you keep the area as clean as possible to avoid UTIs, but your incontinence team should explain everything to you. Hope everything works out well for you.

  8. #8

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    Thank you all, I am really looking forward to being able to go out again without worrying about toileting issues etc, so far this year we have ONLY been out to medical appointments. I feel like a total prisoner.

    I just wish they would also fit the same to my back end! rofl

  9. #9

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    I'm glad you have a solution and I really hope it works out for you just like you want! I hope you are okay.. rupturing sounds very scary. I wouldn't want that to happen to you at all.

  10. #10

    Default Re: Bad and Good News!

    It is 14:20 and we have just realised I haven't been to the toilet since 04:00

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