When I came home, I still had Ureter stints draining direct from my Kidney to a bag, a Foley cath in my penis going from my new bladder to another bag and finally what they called a superpubic tube to another bag. The SP tube is just another cath going to the neobladder through your abdomen. You don’t want to yank this thing, but really you get used to this tube coming out of your tummy!
I met with a visiting nurse who assured me she would help me through any questions, problems etc. that came up and a few days after discharge and the Dr was pulling the stints. I learned all I needed to know about flushing and keeping the mucus clear while I was in the hospital. I did have 2 scares while at home with mucus plugs that sent me back to the hospital once and my Uro once. I had no idea how easy it was to slide that Foley cath in my penis to help clear a plug until he showed me. I felt silly since both times were actually pretty easy to clear but he assured me not to take things lightly. This was my only chance at a neo-bladder so nothing was too small to call.
One week ago I had my Foley (I call it “My Foley” like we’ve formed a bond) removed from my penis and quickly found that as explained, urination would never be the same. Though I had the SP tube just in case, I was told to leave that capped during the day. I found that I would leak a bit then run to the toilet to sit and wait for very little to void. I started wearing large belted pads but did not really need that much. After 1 ½ days and lots of Keagle’s I was doing much better. Same day I had Foley pulled I developed low grade fever (99.8-101.5) the new round of antibiotics took care of that but I did suffer from night sweats for several days. Dr’s assured me that it’s one of those hurdles you have to overcome in some cases. He did a cyctoscan (CT) as precaution but all was fine. Today (4 wks post op) I still have SP for one more week but in a couple of days it’s time to leave capped 24/7. Not sure it’s normal to have SP for 5 weeks but my Uro likes to have as safety and I have found it useful to go one step at a time. I keep dry by visiting the toilet every 90-120 minutes now but do wear a very light pad just in case. When I cap the SP tube in a couple of days I will be wearing full protection at night but hope it’s mostly for insurance.
The last 4 weeks have had good and bad days but in the long run I am thankful and happy. I read a lot here about being careful with local Uro’s and I do agree but I wanted all to know that my Uro did and still does give me encouragement and confidence every time I see him. I do not feel anyone could have done better with the surgery and follow up. I feel very lucky to have stumbled across him through a botched referral but they do say that things happen for a reason!
Best Wishes to All
Haymarket, VA (DC Metro)