New Neobladder - 100% Incontinenence- Is this typical & when will it get better?

I believe the tube was occluded when we left the hosptial(the car ride I'm sure just reinforced this issue)We were discharged right after leaving the post op recovery area. I asked my husband why the bag was empty and he said it was just switched from the foley to a leg bag but was draining fine in the post op area.(we probably should have waited a little bit to make sure it was draining before we left the hospital) but it all worked out well.

I was surprized they wanted to do the cysto under general(it was an all day event)however I believe he wanted to get a closer look into the bladder, maybe to check for any damage due to the large residuals. He didn't even catherize us at the office,said he didn't want to touch anything till the cysto. We are from Hampshire (small town west of Elgin south of Huntley) Did you have any problems with continence after foley removed. We aren't sure if we are to expect incontinence, retention or hopefully some kind of continence. We have a party to go to on Sunday and are trying to decide if we should remove the catherter Sat. evening or take it out Sunday after the event.

They sent me home with that stuff from the hospital since I had the cath for 2 weeks after but the other was a couple of days. I let them know, it was not a good idea.

I am in Buffalo Grove and I had my Neo at Highland Park Hosp. But I do my oncology checkups at U of C. Am surprised at the cysto and general for scar tissue. Mine was done with local and a laser in the dr office while I watched on the screen. Took about 15 minutes. Only thing was I couldn't drive home myself because of the vicadin (or whatever it was )they gave me just before the procedure. but basically, I walked in and walked out (ok, maybe I waddled out)

It sounds like you may have crimpted a tube on the foley during the ride if it came pouring out when standing up. I've done that too. Also sometimes, when I would irrigate it didn't do the job and I had tgo do it again.

Used my sryinge twice already,Great advise. I can't believe they don't routinely send you home with this.

Your information was perfect timing. My husband had and appt. tues. and was told he would have a cystoscopy today to take out scar tissue.(They did it under general ansthesia) We came home (and I made sure I has my syringe ready)at 6:30 pm after 3 hours in bumper to bumper traffic and were surprized to see no urine in the foley bag. With untaping the foley (gravity) and standing the 500 ml of urine poured out before could irrigate out the blood clot. (I've never heard about scarring affecting urination.) At the office Tuesday he had 360ml of residual urine(urine left in the bladder after urinating)They believe the scarring is what has been the cause of all his flank pain and UTI's and causing a frequent drip inbetween every two hours of urination.(It's been a long two months)This Sunday-Mon. he had a temp 103 flank pain and slept for 2 days.The antibiotics we started on Sunday gave him his energy back on Tuesday. This has been our cycle the last 5 weeks,fever,pain,sleep. Starting antibiotics and feeling great then crashing 3 days after the last dose. Were hoping to start a new cycle with some continence after his present catheter comes out this Sat or sun.Our neo was done at UofC so were in the same neighborhood.By the way I loved your story about the turkey baster I thought those stories only happened to us. It made me laugh!

There are a couple of other things you may want to be aware of and I will describe how they have affected me.

First, as you heal, some scar tissue will tend to form at the junction of the neobladder. This would make it progressively more difficult to urinate and be complicated by the build up of mucus from the neobladder which would tend to form sort of a dam that would reduce/block urination. Each visit to the Uro I would urinate into a device which would measure both volume and rate. Immediately following this, they would use another sonogram type device to measure the residual urine in the bladder and I was starting to not empty fully.

My Uro first tried to push it out of the way using (don't quite remember) either a cath or a flexible cystosccope (or some such instrument). This was only successful temporarily. He followed that with a laser device which he inserted to zap some of the scar tissue. I did have to have a cath for about 2 days after that. As a side note, I had asked them for the items I would need to flush the cath from mucus. They said I wouldn't need it ---heh,heh,heh, so naturally, I needed it that night when I blocked up. Fortunately I had a sealed liter of medically sterile water which I use in my water cooled computer. My wife went out looking for a syringe for the water but was unsuccessful at night. I improvised with a turkey baster (the family heirloom turkey baster which now had to be replaced). It worked well enough to get me thru the night without having to go to an emergency room. We got a regular syringe in the morning from a local med supply store and the cath was removed the next day.

That was in January and the procedure is still good, although it has closed up a bit since then. Generally there is enough clearance so mucus blocks can be expelled without too much trouble. My point is that if you are having difficulty urinating, they can give you relief.

You might also note a difference in your ability to urinate at different times of day. I found I am best from early morning to late afternoon and then I seem to lose power and am a little blocked (I am sitting all day and guess it may be partially from that). My ability returns by late evening and seems to fully rebuild with sleep. My guess is that is 'normal'