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Living with a Neobladder, please share your story.

2 months 1 week ago #59244 by Orillia
Hey Leroy, all great posts that will help you.... I would not worry about the mucus too much.I actually look at it as not such a bad thing at all, many of us may very well have contributed to our bladder cancer situation by not hydrating enough and allowing toxic urine to hang around too long. I know that I was very guilty of that. The mucus will let you know when you aren’t drinking enough ( it’ll be globby if that’s a word). When you are well hydrated your urine is fairly clear with flecks floating around. I have never self catheterized and only had 1 UTI ( after I was catheterized for 8 days after a double knee replacement). All the comments about ab work and fitness is very true and very important. I’m 28 months since RC and very very thankful that this op is possible. It’s really great to be alive. By the way I’m 68 and still working as a building contractor and with all my new parts am able to do much more than before all this. Orillia.
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2 months 1 week ago #59243 by pete172
Hi gary, I also had mine done in 2017. Thank you for sharing, I'm now 66 and I could not have said it any better. Leroy, you'll do fine. Stay active and stay hydrated.

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2 months 1 week ago #59242 by garya773
Hi, Leeroy,

I have had my neobladder since 2017, so I will go off of my memories. I know there are a lot of questions that go through your mind. The surgery is not too bad but it was an 8.5 hour surgery. Practice doing the Kegels now so you are used to doing it after the surgery, that is key to gaining control of your new bladder. You will have to self catheterize yourself until you are able to completely empty the bladder on your own. It is really not that painful and I only had to do it for a couple of weeks after the surgery. I have read that some people still have to use a catheter once in a while but I have not had to do since 2017.

As far as the mucus is concerned, I still have mucus do this day but it is not as bad as it was when I first started. At night, initially, you will want to set an alarm for every two or three hours to wake up and empty the bladder. Keep in mind you will have "accidents" during the night so be prepared for it but don't let that discourage you in any way. It does get better as time goes on. I am at the point now where I feel a slight burning sensation in my abdomen during the night so I wake up and empty. Some nights it is only once others it is two or three depending on how much liquids I drank during the evening.

When you wake up from the surgery it is very scary, you will have tubes coming out of your abdomen and a catheter but it is only temporary (my last tube was removed within three weeks of the surgery).

Here is my best advice for a speedy recovery. Make sure you are in good shape before the surgery. I walked every day before the surgery, almost a speed walking. The day after my surgery I started walking down the halls of Thomas Jefferson Hospital in Philadelphia (that is where I had my surgery done at). I walked four or fives times a day while I was there because I wanted to spend as little time in there as possible (I was only in the hospital for seven days).

When you go home you will probably have to give yourself a Lovonox shot in the stomach for 21 days to prevent blood clots, which to me was the scariest part of the whole thing but I easily got used to doing it. As for electing to do the neobladder, it was the best decision for me. I am 62 years old and very active. I love to go on vacations to where ever there is a beach so having a tube coming out my abdomen was not an option. I am alive and only have to see my doctor once a year.
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2 months 1 week ago #59241 by Leeroy
Hi

I’ve just been told I need to get a neo bladder
Did you start to learn the muscle exercises pre opp or you wait until after surgery?
During the night do you practice?
I heard you have to set alarms every night 4-6hrs to empty bladder..is that true & for good?
How did you go with the mucus problem?
We’re you given tablets for that to minimise it?
I don’t fancy having to self catheter...
Any thing else you can think to add.?
Thanks

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2 months 1 week ago #59240 by Leeroy
Hi

I’m looking to do this surgery soon.
How is the mucus build up?
Do you have to self catheter at home for it?
If so ,How is the pain when doing it?

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2 months 1 week ago #59239 by Leeroy
Hi

I’ve just been diagnosed with muscle invasive and it’s suggested to get bladder out for a neo bladder.
Just wondering what’s you can tell me about the surgery,how painful was it in recovery in hospital, how bad is the mucus you get?
Does it ease after hospital?
I heard their are tablets to take to minimise it, do you take them?
How is it learning to empty the bladder?
Did you have to self catheter at home for the mucus? If so, How is the pain?
Anything else you might be able to add?

Thanks

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