Help with Hyper-Continence / Neo-Bladder

Hi Pat,

I just went and checked, and I got the figure of less than 500cc's from Linda Weyand's research on the subject. I trust her and her sources very much, she's been a true data base of info for our email list. It's from Linda I learned about the 'floppy bag' syndrome, also, which is what happens when a pouch or neobladder is stretched all the time, and the reason there needs to be a limit to the amount of fluids between voids.

Linda answered a newcomer's question about the different diversions and I put a 'sticky' on it so that it stays at the top of the postings under the 'invasive' section. A quote,

"....the Indiana pouch and the neobladder have to be stretched to hold 400-500cc of urine so that you can go around 4 hours before needing to void....."

Take care,
Wendy

i found out very early on to have 3 different caths available to me...sometimes the Bard just doesn't want to go in....and i switch to the Mentor clear cath which is softer...the 3rd i rarely have to use..it has a curved tip..... I have an Indiana Pouch but the problems are the same it seems...i learned the hard way...one night nothing i did worked...i was trying everything but standing on my head....headed for the hospital in pain...with caths and mayo jar in hand and just as we got to the parking lot i tried one last time and it worked...750cc's.......so i definately stretched out. But usually at 4 hours i'm at 250 to 350cc's......at night 600 to 650cc's. When they did the test at the hospital to test the capacity they filled it to 450cc's. Noone ever told me not to go behond a certain capacity and usually my bladder won't but it does quiet down at night and i don't wake up. Wendy where did you get that figure? Pat

You might try different style catheders. I had trouble with the "Red Rubber" ones and found the clear plastic much easier and more comfortable. I continue to try a new one occasionaly... as they say variety is the spice of life

It's been 5 weeks today since my RC w/Neobladder at Moffitt Cancer Center in Tampa. Came home after 8 days in the hospital with a Foley and a suprapubic tube. Foley came out on 3/1, and suprapubic last Thursday. I too have been troubled with lower back pains and difficulty urinating, but it's not consistent. Catheterizing relieves the pain, and I've been getting 350-400 cc each time.

My biggest problem is getting the catheter in. It sometimes takes me 10 minutes to get past the urinal sphincter. Anybody else have this problem, and what have you done about it?

Hey Mike,

Boo, sorry to hear you're having that problem. It's not uncommon. It does pass for most men, give it 6 months to a year....or not. Some guys need to self cath and that's the deal. Only time will tell.

Be careful not to let the pouch get stretched from holding too much! 500ccs is definitely too much to be holding on to. Ask what the optimal amount is (I think I remember it being 400cc or less with each void).

Hope you get some tips.
All the best,
Wendy

As I recover from RC w/ Neo-Bladder I find this site a wonderful addition to the advice of my Uro and Nurses so I ask again.

I have found recently that I may be suffering from what I believe is Hyper-Continence. In english... I now find that urination is becoming difficult. This came to a head in the last few days when I was hit by a low grade fever. I told the Dr that I thought my Urine output was lower than normal and he asked me to cath myself and call back. I was shocked when I did this and measured 500mL. My normal output had reached 250-300mL so obviously I have been retaining 200 - 250mL.

I do find voiding most difficult when the alarm wakes me a few times through the night. I feel as if I am so close to cracking the code of living with my new bladder... can any one help?