My story is quite different from most on this site, but it is the ONLY place I have been able to find anyone who has had their bladder removed and replaced with intestine. In July 2005 I had a radical hysterectomy and had severe complications. When I woke up in ICU I kept telling everyone my bed was wet, they said the catheter was just leaking. A couple of days later the catheter was removed and I immediately urinated everywhere and their answer then was that the catheter had just been in longer than usual and it might take a few hours or a couple of days for everything to settle down. I know now what a joke that response was after having lived with a catheter for months on end since then. About 3 weeks later I went to a Urologist who diagnosed me with a Vesico-Vaginal Fistula. I had absolutely no idea what that was, but I wanted it fixed. I under went abdominal surgery within a month of the hysterectomy and it was obvious almost immediately that the surgery had not worked. The Fistula was the size of a silver dollar which in the fistula world is considered huge. He then refered me to another Urologist with more fistula experience. In November 2005 I under went my 3rd abdominal surgery within a 4 month period and then waited. This time the catheters helped but I still had the awful feeling that the whole was still there. After months of arguing with my doc he finally admitted I was right and surgery was scheduled for August 2006, this time a vaginal repair. Recovery was easier but the cath time still the same. Once again it failed and abdominal surgery was scheduled for November 2006. Believe it or not this procedure failed also and 2 more were tried the last being in October 2007. When the last surgery failed he then concluded that my bladder had been damaged beyond repair and would have to be removed. By this time that almost sounded like a relief, I had no idea what I was in for. By the way I am now 39 years old with a 13 year old son and an 8 year old daughter and a husband that must be a saint. The surgery was scheduled for January 2nd, 2008 and I checked in on New Years Day. My surgery was 12.5 hours long and I was scheduled to go to ICU for the 1st night. While there I stopped breathing and was put on a respirator and remained in a coma for about 7 days. I woke up in ICU and eventually began talking and then walking and the staff was amazed at how quick I began to bounce back. I was eventually moved to a regular room and stayed there for about another week. I went home with 4 catheters and hundreds of stitches inside and out. My stomach had been opened so much that they put in something call retention sutchers, they were awful and looked like a bike track around my stomach with bike tubing. I was glad to go home, but was very weak and could hardly move. 2 weeks after getting home I got the flu which lasted for about 10 days, as if I wasn't already miserable. I recovered and 10 days later came down with another fever. They sent me to the ER and I was admitted and eventually diagnosed with Staph and another infection call Psydomonus which can be fatal if not treated within 36 hours. I remained in the hospital for another week and my last catheter was taken out while I was there. Immediately I had no urinary control, but I was so sick and so weak that I really didn't care and thought it was probably because of the infections. It has been about 6 weeks since I was released for the 2nd time and the control hasn't gotten any better. To say I haven't had a smooth post-operative period would be an understatement but at this point I am really frustrated. I figure that I have worn Depends and or Poise products now for nearly 3 years the cost alone is enough to make me sick let alone being a 39 year old woman in diapers. I went to the dr. this week and he says that 1 of 2 things are going on either the pouch is over contracting or there was nerve damage during the surgery both of which he says are fixable. I am having Urodynamics done next week to determine which if either it is. I hope it is really that easy, but nothing in the last 2 1/2 years has been so I am a little leary about it. I started exercising this week, but am still really really tired and weak. Does anyone find that unusual. Everyone around me says I am just impatient, but I am ready to get on with my life. While I don't have cancer, I feel my story is probably very similar to some of yours. If anyone has any advice or info that could help me with recovery and or patience I would really appreciate it.
Bionic Bladder(that's what my kids call the new pouch)