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Living with a Neobladder, please share your story.

3 months 4 weeks ago #58983 by falcon
Re Blood in urine, in one of my earlier posts I described that this can happen after neobladder, and sometimes can be quite scary, eg urine that looked like red wine! But it has never turned out to be sinister, always just some minor inflammation, or inflammation which unchecked can become a raging infection because of all the bacteria present. Letting you bladder stretch too much can cause some irritation. Don't ignore, but don't panic either. The lack of nerve endings means that the typical symptoms of UTI may not be present. I tend to keep some antibiotics on hand to self treat if I suspect this, and only go to my urologist if it doesn't go away in a couple of days or so..
I am now into 23 years with a neobladder, and I am still 100% daytime continent, but nighttimes are not so good as they were. I leak a little most nights, not enough to be a full accident and require pads, but enough to be a bit of an issue. I am certain the main contributor is not failure to contain, its failure to properly empty before retiring to bed. So instead of starting the night with an empty bladder, I have a 'heads' start which fills up faster than I wake up!

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3 months 4 weeks ago #58971 by Orillia
Way to go Boat . My experience was similar to yours. Quick recovery and early fitness regime. I’m now 26 months in since diagnosis and 24 months since RC with neobladder.This reply is for you Boat but more fo Falcon one month back. I started having sporadic blood traces in my mucus, usually just one at a time and only off and on. One a week then maybe not for a month , then two days in a row. I’d had a double knee replacement operation 11 months ago , had to be cathed for a week which resulted in a bad infection. Anyway , I thought for awhile these traces were just residuals from the infection coming out over time,( and that may be the case , since the neobladder has some folds and pockets ). Anyway, finally my surgeon gave me a thorough exam,(2 cultures ,2 cytology tests, a flexypeakaboo, and a CT scan with contrast, and all came back no problem. So what’s with the blood? Who knows is about the explanation I got. Over the last 11 months I’ve been trying to get some scientific feedback on this phenomena, to no avail. So it could be strenuous excercise, which I get a lot of through my work but I just wanted to cherp in that it happens and it doesn’t necessarily mean something sinister. Orillia.

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3 months 4 weeks ago - 3 months 4 weeks ago #58970 by Boat
I am 65 yrs old. T1 bladder cancer, prostate cancer. T1 showed up in 12months after 12 BCG treatments for Ta/cis.

I had my bladder, prostate, and specific nymph glands removed last week, on 01/23/20. I was home five days later. Today 2/2 is my 9th day at home. I went home with Foley catheter, Supra Pubic catheter, and a peretonium catheter.
How did I get out in 5 days? I did what I was told to do.
1. I got pre-op physical therapy for pelvic floor muscle exercises, and practice. I went into surgery with a very clear understanding and control of this group of muscles.
2. Get up and walk as soon as you can. I was up walking 12 hours after surgery. On day three I walked over a half a mile. Day four and five I walked a mile each day.
3. HYDRATE, hydrate, hydrate. Drink 8 ounces of water, every waking hour. (This I m told will also be my new normal fluid intake)
4. Get off the opioids ASAP. It slows down the bowel!
5. Get that bowel working! Eat good food. Leafy green vegetables, Irish oatmeal, etc, etc. along with intense protein like chicken, fish and lean cuts of meat. Good food is two fold... For the healing process, and to get that bowel moving. My bowel movement has been getting back to normal already.
I was experiencing cramps and water diarrhea in the hospital, and one day at home. It turned out it was my reaction to Senna. Senna was too intense of a laxative for me. Switched to Miralax, and A-OK.

I have been blessed with extended life. Truly, what can I complain about?

Will I face future complications? Yes, perhaps I will. However, I am not going to speculate or worry about what "may" happen. I'll face it when and if it shows up.
The following user(s) said Thank You: Runner2020

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5 months 1 week ago #58774 by Boat
I'm 65 and in excellent health.
I was diagnosed 14 months ago with Ta papillary tutor w/ CIS.
Had 3 TURBTs 12 course BCG's and my cancer went from CIS to T1 in 12 months.
Scheduled for RC and neobladder on 01/23/20 at University of Washington.
I've read incessantly both here, and elsewhere, and I thank you for all of your input.
It has helped me greatly in my decision making.
My surgeon does on average one neobladder per week. He uses the DaVinci Robotics.
I'm already in PT for pelvic floor muscle etc. work.
I'm active, ride my bike everyday and eat well. (maybe eat too much at times!:)
What I have gleaned is to be determined to succeed, be in good health entering surgery, stay hydrated, exercise those important muscles, eat a diet that is good for your bowels, and I bet chewing your food into mush before swallowing would be a good idea.
I feel blessed that my cancer is confined to my bladder, and blessed that such modern surgical techniques is available to me.
Thank you!

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5 months 3 weeks ago #58734 by walter
Thank you, Falcon, for sharing your story.
I underwent surgery 16 months ago and got a neobladder.
Everything has been going well, with regular 6-month check-ups. Next one is scheduled in one week's time.
But as you describe in your story, when you have had bladder cancer is scary to face the regular tests.
My worry has to do with bleeding. Today, I had some blood in my urine and got paralized, afraid of what it would mean. Is it something I have to expect to happen from time to time?
Tell me more about your experience on this point.
Thank you,

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1 year 5 months ago #56465 by falcon
Good luck. I don't blame you for holding off on more surgery. Back when I had it done it was far from routine an took over 12 hours. They have slickened up a lot, but RC is still major surgery.
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