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Neobladder

11 years 6 months ago #5567 by Patricia
Yeah some have different thoughts on that...at Indiana they take it out right away...Cleveland decided to torture me with 2 days of it.......i guess they all have different protocals on it. Pat

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11 years 6 months ago #5557 by mznoregrets
Hello Pat,

  If I had that NG tube ....it was removed pretty quick after the RC as I don't really remmy it. I must have been lucky after all :)
                           Holly

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11 years 6 months ago #5546 by Patricia
Holly just curious...did you have the wonderful nasal gastric tube?? That was 24 hrs i didn't need !!..........Pat

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11 years 6 months ago #5541 by mznoregrets
Hi lemkebunch,

   I"m Holly....42 and just got a neobladder March, 13  2007. I had a high grade invasive cancer with a variant that made it to stage 3 (through the muscle and into the fat) when RC was done. Mine was done at Mayo's Rochester by Dr Blute who has much experience and helped pioneer this procedure for men and then for women. You will want an experienced surgon for sure. My surgery was also done with da vinci robotics which cut my surgery to 3.5 hours from the 7-9 it would have taken otherwise. To be sure, I am glad I have the neobladder.

  The time just after surgery was a little tough...I woke up with stents from both kidneys, a JP drain on my left side, stiches (not staples) in my 6-7 inch incision, a 5 way foley catheter. I had oxygen tubes in my nose  and 2 IV's in my arm. Maybe a few more tubes but they came out within a few hours of waking up. I had morphine in a button pump to controll the pain. It hurts but I was walking the next day with help, my bowels woke up after a few more days and I was able to eat food :) and I went home 8 days after surgery. What I feared was much worse than what it ended up being. lol

  If I can help or if you'd rather PM me - feel free. It sounds like you have been thru enough....Love, Holly

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11 years 6 months ago #5535 by rentanag
lemkebunch,

Hi, I'm also female and I had my neobladder surgery in February 2004.  I've just updated my Storyboard line and you might find my story informative and of some use to you in your situation.  I am sorry you've gone through all of these treatments for your bladder problem, and especially that you've had to be on all the pain medication you mentioned.  That cannot have been easy, and I think you'll find this surgery and it's results like a miracle for you.

Sincerely,

Lou Graham

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11 years 6 months ago #5524 by timb
Im a man but in my neobladder experience the pain was very well controlled. it was more like discomfort really. I had spinal drippy thing for pain meds over morphine which really worked very well indeed. Everything below my chest was totally numb for about 3 days and then the pain was easily controlled with paracetamol, oramorph (a sort of castrated morphine!) and just oral meds. I lost about 2 stone in weight but have now put it back on (this took about 3 or 4 months). the drain tubes are unpleasant but you can deal with them and as they gradually get removed you begin to feel yourself coming back to normality. The worst sensations were discomfort from the tubes - not overwhelming at all- and the damned sticky backed plastic they used to keep the wound clean. when the hair they'd shaved off started to grow back it made this very uncomfortable. but, again, this comes off within the week (if they even use it where you are). Im a little older than you at 44 and had my surgery in October last year. Im doing pretty well and was starting to feel a lot more like my old self about 6 weeks or so after surgery. If you have a partner its helpful but if not then make sure you take up friends offers of help. Im sure you have a million questions about how its going to feel with the neobladder. months down the line its become me and is no more than a management issue. I have a bit of leakage at night but days are pretty normal. I do 99% of what I did before in terms of eating, recreation and work. I swim, drink beer, take holidays and have barbecues. As a woman you will have different issues to me. But I hope this helps in some way.

Tim :)

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