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Needing neobladder surgery

11 years 6 months ago #15611 by danpeters
Randy, I had my surgery in January 2008. I had had previous, unrelated surgeries and was expecting the pain. It never came. No question it was very debilitating but here was no pain. I awoke with three abdominal drains plus the foley. The removal of each hurt a bit but was not "painful". The procedure lasted 12 hours - I was told it could vary and mine was on the long side. My surgeon also prepared me for the possibility that he might not be able to use my intestines to make the my new bladder. Just one more thing to prepare for.

I was 58 years old at the time of my surgery and in reasonably good shape. My hospital stay lasted 12 days. Two weeks after that the foley was removed (a happy day). I've been 98% dry since then. In the first few months occasional night time leakage and occasional leakage upon heavy lifting. Learning to self-cath before I left the hospital was important. Even though I came home with the foley I wanted the staff to walk me through it a few times before I had to do it for real. Today it's a part of my routine I don't give much thought to.

I was glad I loaded my i-pod with a variety of music in anticipation of some long days and nights in the hospital. It was therapeutic.

Dan

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11 years 6 months ago #15424 by Joe M
I had a cytoprostatectomy with an illeal neobladder reconstruction in June of 2003.
They took the entire bladder and prostate, and made a new bladder out of a section of small intestine.

The only thing that was a real bother, was the tube down my nose, into my stomach, so nothing would go into the digestive tract, until it healed. That took 11 days.
After the 5th day, they let me suck on some ice and hard candy...IF I agreed to spit out everything and not swallow it.
I agreed, and having some taste sensation was a real treat.
There are perks to being a good, cooperative patient!


Other than that, no real pain - a morphine pump helped, and I was up and walking the next day...with tubes in just about every opening I had! A little discomfort but I wanted to recover ASAP, so I gave the effort 110%.
I can only suggest anyone, who has the radical procedures to be nice to your nurses and doctors and make the efforts of recovery, right away. They notice this and they are more willing to let to have some perks.

Good luck, and get ready to walk around with an IV, and lots of tubes.
Make it a learning experience, have fun with the new knowledge and remember, you are the one who has to recover.
So hit the ground running, be confidant and informed.
Be glad they can operate, that you have a excellent chance of recovery.
I accepted the things I would need to do, in the future, as simple biological processes.
I refused to play the victim. It was my own fault for smoking, which is the likely culprit of my cancer.
I was lucky to have had survived, a stage 4 cancer, and be here today to blog as irreverently as I do.
Take that bladder cancer!

PS: My first meal was nice hot french fires. The hospital has the best in town, and the cook ran them up, hot and fresh at 2AM. I shared them with the night nurses, and we didn't tell the doctors in the morning!
He saw me eat some cream of wheat!
Shhh..don't tell anyone!

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11 years 6 months ago #15324 by carolyn king
I was like you posted a "scared" before my neo. Surgery at IU Med Center with DR. Koch that lasted 3 hours. Had catheter with 2 stents all coming out of the urethra. ONe small drain and an incision below my belly button to the pubic area. I asked for a block that they also did in surg so I would be pain free for the first day which was wonderful. You can walk and move but you have no pain...then had a pump with oral pills. It is hard to believe but the worry before surg was worse than the actual surg. I stayed 9 days it takes awhile for your bowels to get going. YOu need to walk and just go through the post op period. The worse thing for me was the poor endurance. It takes time to feel back to normal. I'm 3 months out and back to work and feel normal again. Dry 90 % of the time with a small night incontence which is getting better. I wear a depends at night just in case. Good luck to you.

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11 years 6 months ago #15281 by Dale50
Randy,

The question of smoking parents is another one that is studied by M.D. Anderson along with did they smoke in the house and car, the answer in my case was yes to both questions. My father is 85 and smoked for 45 years and I was suprised to hear him say that maybe their smoking had some effect on my cancer because of the second hand smoke I was exposed to from birth until I left home. I don't believe anyone here will say the surgery is not tough but you can get through just judge your progress by the week not the day. As I told you I am 50 and had my surgery last December, I was back at work in 4 weeks and beside the bowel I am normal again at 20 weeks. To me the instetine part of the surgery is the worse as I am not back to nornal with bowel movements yet, you will have cramping and loose stools for a while. But the new bladder will work as I can sleep longer at night now without peeing than before the surgery.

Good Luck

Dale

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11 years 6 months ago #15088 by newbladder
Randy,
I would concur with most of the postings. I am 61 & in really good shape, have exercised all my life. This is a BIG operation & be prepared for some down days. Fortunately there are really good medications for pain & this will be well controlled. I am 4 weeks post RC & have started to feel better & can see a life after RC. I researched all the major centers before making a choice. Vanderbildt was on my list as it has an excellent reputaion for this surgery.
Good luck with your surgery.
HK

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11 years 6 months ago #14978 by Ran man
Thanks everyone for the responses. I will be going to Vanderbilt Hospital in Nashville for the surgery. I am a non smoker and never worked in chemical plants or anything like that. Both my parents smoked growing up, so I was around smokers until leaving home at 19. I really appreciate all the responses and will keep everyone posted on things to come in the next few months.

Randy

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