Mets Day 27 - bad mucus

While we await the pathology results that will let us better understand how metastasized the cancer was, I continue to deal with the cascade of consequences of having the bladder removed and a neobladder created out of a chunk of my small intestine.  The doctors did not actually remove the small intestine, because doing so would have required them to have severed all of the blood supply lines, nerves, and other connections that kept that tissue alive.  Instead, they took a piece that was immediately above the bowel, cut off each end (and reconnected my now-smaller intestine), then fashioned a neobladder in a funnel-shaped pouch, topped off with a Z-like structure.  The ureters from my kidneys were connected at the top of the Z, and the output to urethra is at the bottom of the funnel. 

The trick is teaching the new bladder to act like a urine pouch instead of a bowel.  That part of the intestine likes to produce a lot of mucus, which binds with solid waste to create feces.  Now, however, there is no solid waste in the urine, and so the neobladder creates lots of mucus with nothing to do.  Too much mucus clogs the drain lines, keeping the urine from escaping.  That's bad because an overfull neobladder can rupture, or urine can back into my kidneys and cause sepsis. 

One of my jobs over the next few months is to teach my neobladder to make less mucus.  I currently have two tubes out of the neobladder - a Foley catheter, and a suprapubic tube.  Both are connected to external drain bags.  In plumbing terms, it's a bag with two exit pipes.  At least three times a day, Jennifer and I disconnect those drain bags and use a 60 cc syringe to flush the tubes with saline to keep the pipes clean.  In theory, this saline flush pushes the mucus out the other tube.  You're also supposed to be able to draw the syringe back after each flush, and suck mucus out of the neobladder.  We practiced it several times in the hospital, and were comfortable with doing it ourselves upon discharge. 

Yesterday afternoon, about 2 hours after discharge, the Foley catheter was blocked by mucus, and we could not draw back or get it dislodged.  We went back into the hospital, where the doctor and LPN and nurse all worked on it and could not clear it.  They said to wait, since these things typically cleared up with time.  Plus, the SPT was fully functional, and that was my "lifeline."  As long as that flushed and drained, they said, I had nothing to worry about. 

This morning, my SPT clogged up.  We could neither flush nor drain either tube.  I was pretty worried, and after an unsuccessful phone consultation, we went back to the hospital.  Of course, by the time that the doctor came in to see us, the blockage had partially resolved itself, and she was able to flush up one tube and see discharge from another tube.  She was not able to draw back from either line, however, indicating that there still was mucus adjacent to the drain points.  She said that we should continue to flush at least 3 times a day, and as long as there was drainage, all was well. 

So we closely watch the output, flush often, and hope we don't get clogged up with that unneeded mucus.  I still have leakage from where my SPT tube exits my abdomen, so I have joined the wonderful world of Depends wearers (and I'm not even 50!)  I thought it funny that each package of Depends contains a free membership to AARP.  I'm not ready for that.  Plus, I don't like eating dinner at 4 pm. 

As for other physical aspects of my recovery, I seem to be slowly progressing.  The pain is slowly receding, but it can surge back unexpectedly quickly.  I can twist my torso (albeit slowly), and can get up from seats unaided.  I'm not able to do situps yet (not that I've tried), but can gently roll over in bed.  Jennifer and I just got back from a walk around in Hyde Park, which was the first time I've spend any time outside since the surgery.  Going for walks is easier to do while wearing the urine bags that strap on the thigh, instead of the huge ones that are the size of dinner plates.  The doctors emphasized that I was not sick, but was an otherwise healthy man (well, except for that cancer thing) who was recovering from major surgery.  They encouraged me to gradually increase my physical activity and stamina.  One day at a time.