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Living with a Neobladder, please share your story.

8 months 1 week ago #56398 by lotech35
Sorry to hear that,

I had the same diagnosis and went with an indiana pouche. Im continent day and night. I can only empty with a catheter inserted thru my abdomen. It takes getting used to but when I feel a slight ache in my left side I know I have to empty usually every 5 to 6 hours depends on liquid intake. It dosent hurt no nerves inside.

I hope this helps.

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial....

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8 months 1 week ago #56397 by lee83
Hello all,

This message is for everyone with neobladder. I'm a 35-year old male recently diagnosed with bladder cancer. My doctor told me I have to get my bladder removed and neobladder is one of the options. My biggest fear is though (besides incontinence) having to use the catheter to completely empty the bladder. I heard without the prostate it doesn't actually hurt but I'd still like to know how much discomfort, inconvenience, or pain it would cause in everyday life. I'd greatly appreciate your insight. Thank you in advance.

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11 months 3 weeks ago #55709 by pete172
Hi John, September 2nd will be 11 months with my neo and I am one that still has almost zero contenance when I am active. I started using the Cunningham clamp about 2 weeks ago. Yes it does keep me dry, it takes a little to get use to. As of now I have to use the toilet every hour and a half, or two hours and release the clamp, and I can keep it on for about 5 hours if I'm out and I need to. But it does take some experimenting with the fit.

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11 months 3 weeks ago #55707 by JohnDee
Hello.
I had my neobladder surgery (keyhole robotic surgery) on 3 July 2018. I stayed in hispital for two weeks and the catheter and stents were removed three weeks after surgery. I was wholly incontinent for about two weeks thereafter and was beginning to doubt whether I'd ever be continent. However, I kept at the pelvic floor exercises (my physiotherapist strongly advised combining these with deep breathing exercises at the same time) and I am now largely continent, although I need to go to the bathroom every one to one and a half hours, and I leak when I sneeze or cough.
I'm a light sleeper and get up during the night whenever my neobladder tells me it's full. (I wear a nappy as a precautionary measure.) My consultant assures me the frequency with which I need to pee will decrease as the neobladder expands.
I'm going to try a Conveen Optima sheath and bag to allow me to sleep longer at night - and possibly for longer flights - and am wondering about using a penile clamp occasionally. Does anyone have any experience of using these?
Thanks, John

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1 year 1 month ago #55519 by Tayls666
Hiya Pete172.
I had “fragile” control of my continence when I walked out of hospital, 2 weeks after my surgery. However I have to stress it really was fragile as if I sneezed, coughed or did anything that involved the quick “grab” of my abs, I more often or not had the common accident. The more pelvic floor muscle excercises I did, the better my control got. I was doing about 10 min excercise 3 times a day and it really did help me gain control, but as you know, it’s only during waking hours. We will never have night/sleep continence as our new bladder does not have a nerve connection to our brain. During the day wears me out also........for me that uncomfortable, sort of cramping pains as the bladder starts to refill starts about 15-20mins after my last pee & gradually gets worse until anywhere between 2 or 3 hours, I can’t take it anymore and have to quickly find a toilet. As for intimacy, from what I understand, it varies with every individual depending on where and how much of the muscles had to be taken off. For me, I’ve been one of the lucky ones as by about Day 5 or 6 after surgery, I realised in the morning that I had 100% functionality. My advice to anyone who has or is in our shoes are 2 things......(A) do your pelvic floor muscle excersises with strict focus & (B) it is soooo important to NOT put xtra weight on as our new bladders are smaller so you don’t want it crowded & squeezed by xtra tummy fat. Good luck with it Pete
The following user(s) said Thank You: pete172

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1 year 1 month ago #55513 by pete172
Thank You Jeff and Tayls. How long did it take before you had control during the day? Is there something I'm not doing? This week will be 9 months, and I can deal with getting up every 2 hours at night and wearing pads, even the sleep deprivation, at least I think I am. It's during the day when I'm trying to get things done, sometimes it brings out that other side of me as the day goes on. {Witch I try not to show} Intimacy is a whole other issue, the doctor says it will take about a year? Stay Well All, It's a beautiful world and we're here.

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