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Living with a Neobladder, please share your story.

1 year 2 months ago #56436 by Alan

One of the best explanations of pre-op help I have read. Thanks. We all learn from this forum!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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1 year 2 months ago #56434 by JohnDee
Lee, I suggest you ask your medical team for support on this as ) there are a multitude of disposable, self-lubricated, self-catheters on the market and b) it is important you do not touch the part of the catheter that goes inside you, due to the risk of introducing infection. Use is easy, once you know how, but perhaps not so easy if you are trying it for the first time and without guidance.

I also suggest you obtain a bag from your cancer nurse, attach it in roughly the correct position, and try living with it, empty, for say 48 hours. I did this on advice of one of the specialist bladder cancer nurses and, on similar advice, tried using a condom catheter overnight. The former made it clear that I would not be happy with a bag; the latter that there was an effective overnight solution to incontinence, should it be required. The support personnel at Convene are very helpful and will supply sample condom catheters in a couple of sizes if you contact them.

I am 61 years old and had my neobladder surgery in early July. As noted previously, the first few weeks after surgery were very difficult as I was totally incontinent and feared this condition would last. It did not, and I am now almost completely continent. My neobladder capacity has increased to 400 ml and I only need to get up at intervals of three hours or more during the night. (I do have condom catheters and could use those to sleep through the night, but getting up occasionally does not bother me. Spoilt for choice!)

As others have noted, the likelihood you will need to self-catheritise is low. It's probably almost inevitable initially, but only for a short period to establish that you are allowing your neobladder to drain properly. Once this is established, self-cathiterisation is largely a thing of the past. (I self-catheter perhaps once every four to eight weeks, just to check I am draining properly. I do this in the shower as, occasionally, there is perhaps 10ml of urine left in my bladder. Such a small volume is of no significance but doing it in the shower means I do not need to worry about the 10ml of urine getting on things and have both hands free for the catheter.)

I'm now travelling regularly with work and socially (my last trip was UK - France - Nigeria - Dubai - Egypt - UK) and I am very happy I elected to go the neobladder route.
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1 year 2 months ago #56432 by lee83
Good afternoon all,

I'm thinking about trying self-catheterizing before the surgery to get an experience what it's like. Any recommended brand or product I should try that are easy to use? Thanks.

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1 year 2 months ago #56421 by pete172
lee, I had no pain, really. They put in an epidural before the surgery and when I woke up they told me if I have any discomfort, press the button. The next morning they had me up sitting in a recliner, that afternoon I took my first walk around the hall of course with an aid and a walker. I was very surprised, by the next day I was doing laps, me and my walker,poll in tow. There really was no pain, and the discomfort was minimal, even when they removed the staples. AND I AM NO TOUGH GUY. Stay positive, stay in shape, it will all workout. I also stared using the condom catheter to sleep, it's much better then getting up every 2 hours or so. Stay active and stay hydrated.
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1 year 2 months ago #56419 by lee83
Also what was the most difficult or painful part about recovering from neobladder surgery for you besides incontinence? Do you mind sharing? Thanks.

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1 year 2 months ago #56417 by lee83
Thanks for your advice. It really helps. Many people told me the same and I also can't imagine myself spending rest of my life with a bag hanging out of my abdomen. I defly want to hear more from people before I make my final decision cause once I make the change, there is no going back for the rest of my life.

So strictly speaking, condom catheter is not a catheter, it's just a device to catch the urine so you don't wet yourself during the night? In other words, you can't empty your bladder with it?

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