Neo bladder question

Hi Irishguy!
My consultant seemed quite happy with my current voiding pattern when I saw him last so I'm not too worried. What is concerning is the sheer amount of 'gunk' I'm passing out to put it politely! I understand that the new bladder will still act as bowel (for that is what it is) for a while but no-one seems to know for how long this will happen. Even my consultant did not seem too worried about this. Anyone else have this issue?

Thanks warren,

It does make sense when you put it like that. I have noticed lately that my night output has peaked at three hours. Once i went for almost five hours(and didn’t leak) when I forgot to set my alarm. Can’t wait until I average every four hours during the night, so as to get some quality sleep!

I think I might know the answer to that. Most people's urine output is less at night, not only because we're drinking less while we sleep, but also, because as part of the body's natural rhythm, antidiuretic hormones is secreted at higher levels at night to make the urine more concentrated at night. There's a lot of things that go on during sleep hormonally that are different from daytime. The antidiuretic hormone part is probably important to the integrity of sleep, but who know. It may serve some other purpose as well.

I hope some other neo's respond because i'm curious to. I think a lot depends on the institution and whether they have a team of stoma nurses or not as to what you get or don't get?...The Stoma team at the Cleveland Clinic has their own building and clinic and they are extremely thorough...I had a measuring plastic thingy measured in cc's...a syringe and bottle and saline solution to irrigate on a regular basis...they sent me home with l00's of catheters and lube and bandages and instructions. In fact they watched over me like a hawk when i was learning to cath to make sure i was doing it right and taught me a few little tricks to complete emptying. So now at this point and time i only cath about 4 times a day and i sleep thru the night. I do not drink anymore or less than i did before my surgery. Sometimes i still measure but never bother when i'm out obviously..it gave me a good gauge as to what i was putting in and what was coming out in the beginning and my usual output is between 250cc's and 400cc's...morning is higher at 500 to 600 cc's.
So obviously its a whole different ballgame betweeen the neo's and the Indiana's.
And the score is?????????????? Pat

Oh Pat - I am so glad you have brought this up I have wondered what the deal is about measuring...
I got my neo on 3/13 and when I went home I wasn't told to measure anything.3 weeks later when my cath and all tubes were out - I wasn't told to measure nor was I taught to cath. I prayed it would work and it has.
Within 1.5 weeks of my tubes/cath coming out - I had a port put in my chest and chemo started. I was given lots of diuretics with chemo so I basically lived in "pull ups" til August - not because I had no control but for many reasons...cisplatin made my feet hurt bad plus my nerve damage in right leg was bad. I threw up everyday the last 2 month of chemo so that hindered alot too. Then I really gained continence fast.
At my 3 month check - they did pyleogram sp? and asked how it was going. Same at the 6 month. I couldn't tell you how much mine holds - and they never ask either. And I have wondered the whys of it all!

Currently - I seem to go as often as I did before the bc. At night tho I am up 2-4 times to go - never an alarm clock either. I just get a cramp that wakes me up and I go.
Heaven help me - now I am curious!
God bless, Holly

Just curious ...holly how often were you told to void? I know with the Indiana Pouch its a process of emptying every 2 l/2 hrs for the first week, then every 3 hours the second week, and up to 4hrs the third week to gradually stretch the bladder. Night time it gets better after about a year where it generally leaves you alone for 6 to 8 hrs assuming you limit your liquid intake in the evening. Is there the same training for the neo? And is it different in the UK?
I can't imagine the sleep deprivation!!....Pat