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Neobladder v. Florida Pouch
Thank you all for your input to my questions. I am going to the VA Hospital in Tampa, FL on 31 October. I have gone back and forth regarding which procedure to choose. Since having read Bob’s wife posting regarding the difficulty for the caregiver (my wife) I thought I had made up my mind. Now thinking about all the potential mess after the catheter comes out, not only cleaning after leakage, the stench, the expense of Depends and pads has caused me to once again lean to the Florida Pouch. This is a last ditch effort to solicit responses regarding pros and cons for each procedure. I have been to all the links provided by this site and members thereof. One pro for the FL Pouch is that there is no three weeks of a Foley Catheter. Another is that there is no leakage. Is one more susceptible to infection than the other? Does one hold more that the other? Aside from carrying stoma covers and probable skin irritation and never forgetting to bring catheters to work or anywhere else I might go. I don’t see a lot of difference. PLEASE GIVE ME YOU INPUT!!!!
Carpenter-Vietnam Vet-Father of 4 boys4 Replies-
Right, don’t read the caregivers situation as I am sure your wife is a loving and caring person who can deal with what others cannot. Pick your deversion for a long term situation, some of the issues are short term, and down the road pay off. Ginger
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And closing no matter what 3 of the diversions you have picked my friend you are still alive. Joe ;)
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Mc,
I have to plead ignorance about the Florida pouch. Long ago I decided that I was never going to be, and could never be, an expert on bladder cancer. When I read about different diversions or chemo protocols, my eyes glaze over and I often skip them. I’m officially out of the market for procedures. Once you’ve had yours, there’s no since looking for a better one. I have a friend who has never bought a computer printer because he keeps waiting hoping something better and cheaper and faster comes along. This has been going on for ten years! I think we should decide, do it, and not look backwards.
What I am an expert on, though, is my particular situation. I have a neobladder (I’m 51, by the way) and have no difficulties with it. In the beginning there was a learning curve, but with a few months I was fine in the day-time. Nights were another matter; I had an additional surgery to install an artificial sphincter and now I’m fine all the time. In time–that’s the operative statement–everything new becomes a normal part of your life. My neobladder is a little different than my old bladder, but I’m so used to it now (after a year) that it’s second-nature. It requires absolutely no thought. It… just….. works.
If you do go the neobladder route I think you’ll be pleased. If you go the Indiana route I think you’ll be pleased. Likewise with the Florida pouch. The Rhode Island pouch I’m not so sure of.
This is my short-winded way of telling you that I think you’ll do well with whatever you and your surgeon decide on. Of course you’ve read many posts here on the importance of finding a surgeon who has done many of these procedures.
Best of luck to you.
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinMc…keep in mind what you are reading is just one persons feeling about the aftermath and its coming from the caregiver not the patient…its not the same for everyone who has a neobladder. And its a very temporary situation when you put it in perspective. The most important part is that you have a surgeon who does the neo-bladder and possible nerve sparing ALL the time…..the single skill of the surgeon is probably the most important part of this entire process. I would talk to Zachary or Tim as they have had great success with the neo-bladder.
The pouch can get a little grumpy in the beginning also and you will be wearing a bag for 3 weeks while your bladder heals..the catheter comes out of the side of your abdomen. You can switch to a large bag at night so you can get much needed sleep and wear the leg bag during the day if you wish..its very easy to empty. You do have to flush the catheters frequently but its not difficult ..i didn’t need any help doing it. Once you’ve healed and all tubes removed you’re ready to train the pouch which takes time..you have to set your alarm for every 2 l/2 hrs for a week…then the next week try for 3hrs…the up to 4 during the day. You’ll have to irrigate with saline a lot as you will produce lots of mucus. And sometimes your Pouch will decide its not going to wait the alloted time and will leak or spurt out urine and mucus. You eventually get the hang of it dependent on what you drink or eat…it does still think its a bowel for a while. You will hate getting up in the middle of the night and feel quite sleep deprived for a while…….but saying all this…this too shall pass and life will get back to normal.
There is no right or wrong choice except in the choice of physicians and their expertise. Most patients who have the neo love it….Most patients who have the Indiana or Florida love it…and the ilial conduit people are most comfortable…just takes a bit of patience dealing with a new diversion.
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