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Living with a Neobladder, please share your story.
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Greetings,
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! -
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,
Walter -
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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thanks, I’ll try that. doc is suggesting a type of mechanical sphincter. i’m holding off on that surgery.
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Don’t know what to suggest, that is a while. Have you tried urinating and trying to stop start over and over in mid flow. That is the one that got me in control. Its about feedback to your muscles. I also worked my sphincter muscles all the time to begin with – sitting at traffic lights, watching tv ….
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I just don’t know. It’s been 14 months and I just can’t get control.
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I really stopped once I became good at it. Just using the muscles for normal control seemed to be enough. But that doesn’t mean it wouldn’t be a good idea to continue do some excercises regularly. We are all a bit different.
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Do you continue to do the exercises or is there a point or time that you can stop?
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I had my neobladder surgery in 1997, so now well over 21 years.
Recovery for the first 7 months was tough and initial continence was poor for about 2 months and a bit depressing, but then magically I mastered it. So persevere through the early problems. Since then I am 100% daytime and over 99% nighttime continent, so I think you can say I am a success story.
I have never had to self catheter.
Only two real blips. One is that over the last two years I have seen an increase in nighttime leakage. Not terrible, but definite change, which I was warned about as I got older and my muscle tone reduced, or if I get so tired that I don’t wake up on schedule – which for me is close to 4 hours. Daytime remains 100%.
The other blip has been a few scary incidents of excessive blood and blood clots in the urine. Maybe about 4 times over 20 years, and each time lasting a week to 4 weeks. Investigations each time has shown they are almost certainly due to irritation set up by over-stretching of the neobladder. I seem to have one area of slight weakness in the neobladder which might inflame when over-stretched. So one lesson is to be careful abut over-stretching. Not as easy as it sounds to always be rigorous, and some of it is caused by over training of the sphincter muscles, which sometimes make it hard to empty. Basically, you get so good at holding it, that it gets hard to release the muscles, and the result is a trickle which you can misinterpret as an empty bladder.
When the bleeding happens I take antibiotics to stop it becoming a rampant infection, and rest and drink a lot of water to flush everything out, while staying careful about emptying. Bleeding can be scary when you have a bladder cancer history, but usually this gets me back to normal in a few days.
Other than that, life has been good on a neobladder!
One thing that can be a nuisance is that you will constantly be misdiagnosed by non expert physicians as having a urine infection. You learn to ignore that, and make sure you stay in touch with the expert that did your surgery or equivalent for best advice. -
JohnDee,
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. -
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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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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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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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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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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