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Living with a Neobladder, please share your story.

1 month 4 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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1 month 4 weeks ago #55707 by JohnDee
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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3 months 2 weeks 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
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3 months 2 weeks 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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3 months 3 weeks ago #55497 by nevadajeff
Thanks for your post. My Frankenbladder just had his 1 year anniversary. My experience is similar to yours. At least my friends who are cancer survivors can put it behind them at some point. Being reminded every two hours by my timer going off of my cancer can be depressing. I am continent during the day but battle the same way you do. At night I am incontinent unless I want to wake up every 2 hours. I have found condom catheters to be a God send. They are comfortable and allow a full nights sleep. You just need to get the right width and length and material. Takes a little experimentation. I use the Conveen Optima brand. 30mm short length. If your surgery caused penis retraction definitely get the short length. I use a 4000ml bag with it and get a full restful nights sleep. It took about a month before my body adjusted to just peeing in my sleep without waking up. On long road trips I will use the condom catheter with a leg bag. Not having to stop for bathroom breaks is great. Overall I am very happy with my neobladder. No need to ever catherize. "Frank" has his good days and bad days and seems to have a mind of his own. These days seem to revolve around being too easy or too difficult to pee. I use homeopathic type remedies and lots of water to avoid UTIs. That has been very successful. I too have noticed that staying active and keeping my weight in a healthy range really seems to help things. Happy to be alive and cancer free (last 9 month CT urogram) !
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3 months 3 weeks ago - 3 months 3 weeks ago #55488 by Tayls666
Hi all. I just stumbled across this site so thought I’d add my story. I had neo bladder surgery 4 & half years ago now and I’m still on the right side of the dirt. I spent 2 weeks in hospital after surgery, lost 13kgs in that time and pushed myself to get back to work inside 6 weeks, which in hindsite was to quick and it quickly took its toll physically & mentally. My surgeons told me & my wife to be mindful of signs of depression as this can be common after major surgeries. Being a typical Aussie male, my reaction was “she’ll be right mate, I’ll be fine” but about a year and half ago, my wife, my GP of many years and myself, realized I had been in the dark recesses of depression for more than a year....I just hid it well but one day I just couldn’t hide it anymore. There were several contributing factors but without doubt, being diagnosed with bladder cancer and the dramatic changes that followed were and still are the major factors. Don’t get me wrong, when I’m not in those dark places, I am truly grateful that I am a survivor and can watch my 4 children’s achievements. But, battling continence issues not just daily but hourly everyday, setting my alarm to wake me every 2 hours during the nite (I still have to wear a pad during the nite for those accidents that do happen), and other associated issues have been a real mental drain. Due to the adhesions to my bowel during the bowel part of the surgery, my motions have either been diahorea often or constipation, which eventually caused an incisional hernia so I am no longer able to do Ab or core muscle excersises. I can say however that I am one of the lucky ones in as far as having 100% intimate functionality so there is always a bright side somewhere. One thing I realized very quickly that if you put on extra weight, it DOES effect your continence as it puts more pressure on your new smaller bladder. I’m 61yo and am on the road all day in sales and even though I have control during the day, I’m looking for public toilets all day which can be very taxing mentally & physically. Anyway, that’s my story in a nutshell.
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