Needing neobladder surgery

Everyone's story is different. I was 58 and in good shape when I had my surgery at Hopkins by Dr. Schoenberg on 11/4/07. The surgery took 3 hours and I walked the next day, and then every 3-4 hours to help wake up my bowels, which I believe is the most important thing. There was only pain that night and the pain killers took care of it. Pain is not a big issue. I lost less than 10 pounds and was in the hospital for 6 days. I had a small drain tube in the hospital which was removed the 6th day and the catheter was in for 3 weeks. I went back to work after 8-10 weeks and started playing tennis and working out at that time. I am 95% continent now. I would say that my erections are around 70-80% of what they were...but I'm thankful to have any response in that area at all. I don't mean to say that the surgery was nothing. I had a transfusion in the hospital and an slight bowel obstruction the next week after discharge. I was in a weird funk in the hospital as well. It was also a struggle to recover, but I got better every day. I still have the idea way in the back of my mind that something can go wrong, even though the 30 nodes they took out were all fine. But I go on with my life as usual and take one day at a time.

Good Luck with your surgery. Everyone here will be pulling for you.

MIke

Randy

Im in UK but concur more or less with a lot of the above. I would add that I opted for the epidural for pain control over the morphine pump which was excellent. I really had no sensation in the abdomen for the first 2 or 3 days after surgery and when it came back discomfort could be controlled with oral meds. it kept me clear headed too and wasn't as constipating as the morphine fr me. the ugly bit for me was the bowels re-awakening. I had horrible diarrhoea for a couple of weeks. they remove a section of bowel which affects absorption and makes your guts pretty ornery for a while. I think I had a bowel infection too but nothing too disastrous. you wake up from surgery with drainage bags and a catheter. the drainage bags drain fluid from the abdomen and also two stents which drain urine from the ureters while your new bladder is healing. I felt tremendous relief as these attachments are removed in the days following surgery. each one coming out was like a step on the road back to normality. it made me hold my breath and felt a bit weird having tubes drawn from you but completely bearable and for a good cause! there's also a regimen of washing out your new bladder in its early days. its made of bowel so produces mucus. i think i had to flush it through the catheter every 2 hours in hospital and then at home. the need for this gradually fades. by the time the last catheter comes out there should be little or no need for flushing. 1.5 years after my cystectomy my neo still produces mucus but not enough to cause any real issues. this can vary from person to person. I lost a couple of stone which gradually came back. I was doing small walks 3 weeks after surgery and was back at work about 6 mo after. I could have gone back a bit sooner but I needed some head space.

All in all, though it's a bit of an ordeal, it is totally get throughable. there will be moments of despair in there but, all being well, you'll look back and be glad you did it. my lifes 98% back to what it was. during the day now Im totally "normal" with 100% continence and at night id say around 90ish depending on whether im drinking beer or not.

all the best to you

tim

Randy... surgery time depends a lot on the surgeon..and some variables as to whether you have any old scar tissue. Dr. Schoenberg at Johns Hopkins usually does it in about 4 l/2 hrs....AT Indiana U. Med Center they average about the same....I know Holly on this site had her neobladder done robotically with the DaVince at Mayo and it was about 3 l/2 hrs......so obviously its just a big variable.
Mostly make sure you are with an extremely competent surgeon who performs lots and lots of these a year and you are in a top notch facility. Its really a very specialized field.
You're young...you should rebound pretty fast. Morphine will be your best friend the first day then Nurse Ratched will come in the second day and get you walking and when you have your first bowel movement will be cause for celebration as they will kick you out of the place pretty quickly.

Hello Randy: My case is a little diferant. I had my RC done simi roboticly with the davinci robot. It is slowly gaining ground for rc. You can read some of my old post on this. I never took a pain pill or morfen, I was out of hospital in 3 days they say I was the first for that time frame. By the way my surgery was 13 weeks ago. I was walking at 6 am the next morning after a 9 hour surgery. They use the davinci to remove the prostate and bladder they also preserve the nerves for posible erection, that has not happened yet. They make a 3 inch incition to remove the old parts and make the new bladder. I also have 5 half inch cuts were the arms go in for the davinci. Then they reatach all with the davinci surgen, By the way one surgen does the davinci the other does the build of new bladder. My age at time of surgery was 58, But I work out and I am into concrete work for 34 years, some say I look more like 50. If you want to talk about any of this you can call me or PM me. whatever I can do to help you out, I sure had others help me, on and off the forum. Thanks guys. ;D Don

Randy,

Where do you live and out of curiosity do or have you ever smoked? Of course this the first questions all Uros ask when BC is discovered, I ask because I have never smoked one time in my life but worked in chemical plants for 10 years.

Good luck!

Dale

Thanks Dale, I appreciate the information. I am 48 and in good shape. My wife and I go to the gym everyday and try to eat right. I am not to keen on pain, that is why I wanted to know about the hospital stay, I know I will get through it but would like to prepare myself mentally, I guess. Thanks again for your info, it helps a lot.

Randy