Neobladder

Hi Anna, sorry to hear you’re having this problem. Not knowing to what extent you are able to void, I’ll just offer up some of my experiences. I’m a male, ( and I guess this can make a difference) and got my neobladder 5 years ago. I have never self catheterized, but there are occasionally times when I feel that I really have to go but there is great resistance. This is always due to mucus build up causing a plug. First off I should add that passing urine with a neobladder is much different. Gone are the days when you’re down , up and outa there lickedy split. When you sit down ,especially in the middle of the night, you have the urge but it just won’t come. At night this is often because the muscles are involuntarily clenched to avoid leakage and it takes awhile just sitting , for them to relax and release.This is common and just takes some patience. I often use the dead time to be productive, put on some lotion, shave,or check the market on my cell phone. Now the mucus build up is another thing. If you properly hydrate throughout the day( 3) litres is good then you should flush that mucus out and your nighttime voiding should not be obstructed by it. Diet may play a part in over production of mucus but I haven’t figured that out yet for myself. So ….. 1 have patience .. 2  hydrate well and … 3 keep your core strong and responsive. Self cathing can lead to scarring and infection so coming up with a natural solution is best . Good luck. Orillia.

You did very well to have such good control from the start. Did you have to keep measurements & check that neo achieved the right size? Inability to empty can be because neo exit has got obstructed - either by scar tissue, or moves position. Also, if it has got too large & is floppy. Good that you can self cath to empty, worth measuring output when full. You might need to have a cyscospy to see what is going on, so do contact your hosp. Depending on the cause of your problem, you may be able to recover the ability, or may be one who will need to self cath. Seems to be quite common for females with neo, compared with men. 

At first I managed to empty, but with some difficulty - but also stretched neo to a good size with a few weeks. My hosp required self cathing every evening. However at about 6 weeks post op, emptying gradually got harder & I had a cysto to check at 3 months post op. As no scarring or other obvious cause, the conclusion was a mix of strong sphincter & neo tilting over. I was allowed to self cath more & ever since, I self cath at every void to fully empty. I have done so for past 10 years with no problems. I can self void anything from nil to about half & I am convinced it is largely due to position of neo, which can alter as you move around. 

Just one more thing to add….. when you’ve finished voiding and you think you’ve got the job done….. you haven’t . Invariably, if you get up , brush your teeth comb your hair and sit back down … voila.. a whole bunch more you just didn’t think you had in you. It may be that partial emptying leads to more mucus production and the problem compounds . Having said all that , I have to say , my neobladder has been awesome. No pain, no infections , only up once a night ( hallelujah). It’s just like being an infant all over again. It takes a couple of years to figure out the new plumbing , but once you do and you learn to treat it with respect , it’s great.

I was also thinking, Anna, you might need to change the way you void. We all find the tactics that help start the flow, be it twisting, rocking, clenching & relaxing etc. My CNS told me that neos continue to improve over 2 years. I'm very familiar now with all the 'moods' that mine has.