Mets Day 139 - slow flow, no go

On Monday I had another appointment and saw Hazel, Dr. Frazier's nurse, to further diagnose and work on the stricture.  I was having increasing difficulties in emptying my neobladder for the past couple of weeks, and could sense that the stricture -- the scar tissue at the base of the neobladder, which lets the urine flow through the urethra -- was re-forming.  I had self-catherterized a couple of times to try to keep the stricture from getting too small.  Pushing the catheter through the stricture usually requires a bit or force, then "pop" as it squeezes through the compression.  Shoving the catheter up the urethra is unpleasant, even with lots of jelly, and pushing it through the stricture involves some deep breathing . . . 1, 2, 3, shove, ugh!  Plus, you need to remember to put the end of the catheter into the toilet bowl or a container, or else urine starts flowing out all over the floor.  Each time I've self-catheterized, I've been so intent on getting it bast the stricture that I forget that there is no valve on the end of the catheter, and draining is instantaneous. 

So Hazel had me do the voiding trial -- essentially peeing into a container, seeing how much I can get out, then seeing how much is left after catheterizing.  I had prepared by drinking large quantities of Diet Coke for lunch, and managed to get about 350cc into the beaker.  I had to strain to get that out instead of having a continual flow.  Straining indicates something in not right -- in my case, it's likely the stricture.

Hazel then had me catherterize myself, only this time she used a more flexible red catheter.  I found that it was less painful than the clear catheter with the blue stripe that I had been given by Hopkins.  I'm not saying that it's something I'd want to do several times a day, but the red catheter is a slight improvement.  Pushing it through the stricture also was not as much of an adventure -- it slid through with less resistance than the other catheter -- and Hazel was there to direct the flow into the container.  I had another 50 cc or so leftover.

Hazel concluded that I had a moderate stricture, but that catheterizing it helped it re-open.  She advised catheterizing each night.  We talked about whether that was a lifetime duty, or whether I could avoid that.  She didn't know.  I told her about my conversation with Dr. Large from the University of Chicago, and that they said that several cystoscopies might be needed to persuade the scar tissue not to re-grow.  She said that the problem with that was that taking out too much tissue around the stricture could mean that I lose all continence, day and night.  I asked how much of a risk that was, and she said that it was a high risk.

This weekend I'm going to do some research into this.  I'm also going to schedule a consult with Dr. Frazier.  I will contact Dr. Schoenberg at Hopkins about this too, and also will email Dr. Steinberg in Chicago.  I don't want to spend the rest of my life catheterizing if I can avoid it, but I also don't want to make the problem worse by having too much tissue removed and having no urinary control.

Meanwhile, I'm still getting lousy sleep each night.  I still wear the Depends each night, and even if my neobladder is totally empty when I go to bed, I still leak at night.  When I leak, I wake up, and I have trouble going back to sleep.  Each morning I get up tired.  This is getting old.  I think I'm also going to ask about a sleeping pill that will knock me out and let me get a decent night's sleep.  To sleep: perchance to dream.  Ay, there's the rub.