Bag Watching

Tim,
Great to hear from you again! I remember my "Last" tube out day vividly. While I was ready to get rid of it, I was also a bit nervous since it meant I was REALLY on my own. You may find that you have little control initially but not to worry, it gets better quickly.

I am going in for my 3 month scan later this week. I'm excited and nervous but regardless thinking positive! Keep in touch my friend!

i only have the one bag. no suprapubic. im gradually getting through this through trial and error. its been a frustrating experience but when i look back a week i can see ive actually come a long way.

I also try to remember how my urine flow was before all this and it did ebb and flow. the same happens now. sometimes the flow slows right down because there's no urine.

my girlfriend has been fantastic and with me every step of the way. ive felt a bit like unless i hit an actual emergency situation then my outside resources are limited - im out of the hospital wards care, my GPs knowledge is limited and the hospitals urology specialist staff are stretched for time. But that's public health in the UK. Im due to have a cystogram on wednesday and, if there are no leaks, my catheter will come out on Thursday. I can't wait. I remember being in hospital and the dread/elation ratio as the tubes gradually came out. and it's the last one. so a great moment. if there are leaks then I may have to wait I suppose. mentally and phsically I'm in far far better shape than I every imagined possible 2 and a half weeks out of surgery. It's going to be a good christmas!

Guys,

Just wanted to let you know that you can cause a mucous plug that blocks your ability to drain your neobladder, I've experienced that very thing on two or three occassions.  Usually it's been caused by my drinking something that irritates my neobladder which causes it to produce more mucous than usual, those things can be soft drinks (coke, pepsi, etc), even just not drinking enough water can cause thicker mucous.
Mty first experience once I realized I wasn't able to pass urine was a little frightening, and I also had some crampy feeling in the area of one of my kidneys.  I went to the kitchen and got out my grape juice, in addition to drinking two large glasses of the grape juice I also had a large glass of ice water.  Tis all caused the mucous plug to be dislodged and it passed along with my ability to empty my bladder again.  If I'd had a measuring cup handy the mucous might have filled at least one and possibly two cups, that was a little scary and I've tried hard not to get into that situation again.  It can also happen if you develope a UTI, which I've had a few times as well.
The best suggestion I can give you is to drink plenty of water to flush your bladder, and activity is a very good thing as well.  You must realize that your new bladder is not the same size and shape as your old bladder, mine happens to sit on the right side of my pelvis and is shaped like a close parenthesis and actually sort of hugs the inside curve of the pelvis.  There are also folds in your bladder that were also not present in your first bladder, this can sometimes cause a problem when you try to catheterize yourself.  Changing your body position or redirecting the catheter can sometimes make it possible to empty your bladder, it's a matter of trial and error.
The next time they do a scope on any of you ask to see the image, and if you happen to have an IVP ask your doctor to show you those images so you can see exactly what your bladder looks like and where it is in your pelvis.  Having this little bit of information can help you, and I hope you are able to get this information from your doctors (they may already have something that shows your bladder--just ask them).

Good Luck,

Lou Graham
RC/Ileal Orthotopic Neobladder 2/2004

Oh yeah Zach...
I was amazed at how the amount of mucus dropped when they pulled the last tube. I have never had a problem... is kinda weird when you get a goobie hanging off your... well you know! LOL

One of the things I was *most* concerned about was the mucus from my neobladder blocking my urine flow and having to catheterize myself.

And of course I went though the same flushing fears you two had before the catheter was removed.

You know what? The mucus is the biggest non-event so far. It passes easily, and hasn't caused one second of trouble or concern.

Tim,
Again, do you still have 2 bags? Cath and super pubic? Regardless I know what you mean about beinig obsessive. WHile I was still in the hospital I did not agree with one of my night nurses and basically told her; "Listen... this is my one chance at a bladder so either you get your supervisor or I start raising hell."

Any way... I did find that occasionally even when I could not suck out with the syringe I still had urine flow but of course I watched closely. I also found that if I had a concern flushing somethimes a walk around helped. Also my Dr taught me to slide the cath in 1-2 inches deeper if flusing was a problem.

Obviously there are several tricks and theories but do not be afraid to go to ER if your concerned. You don't want your bladder to stretch this early.