I am new on this web cafe. I had bladder cancer surgery in July 2003, and received an Indiana Pouch at that time. It has worked perfectly. Initially after the surgery it was many weeks before I had to catheterize the pouch myself as there are tubes in place until everything heals up. After discharge from hospital I was cathing every 1-2 hours and it seemed life would be a nightmare, but the pouch slowly enlarges to hold the urine and learns its new job and now I cath every 4 hours, takes only about 3 or 4 minutes and I sleep at night for a good 8 hours. It would be rare if I woke to cath, usually just if I have been out did not stop drinking by 9. The pouch does not like coffee, it is a stimulant, I drink it but not as much as I used to. It does not mind tea. I sometimes spring a leak if I drink to much coffee as the caffeine seems to stimulate the pouch to much.
There are special bandaids called mestopore that you can buy that help if you have a leak, they absorb it till you can get to the washroom.
I am happy to answer any questions. Life can go on even though it changes.
My biggest problem is that here in Canada I cannot really find anyone who has the pouch so there is not the support network there is in the states.
I have read about the ieal conduit and understand that, post op and I read about the foley catheter after the neobladder but I can't find anything about what they do post op if you have the Indiana pouch. Do you start catheterizing right after surgery or do they somehow put a catheter in while it heals? I would appreciate anyone explaining this to me.
This is such a supportive group. I have already gotten my Josh Groban tape out. I had forgotten how good You Raise Me Up make me feel. I used to listen to it all the time. I also took Lou's advise about the deep breathing.
I have my meeting with the surgeon tomorrow and wanted to be as knowledgeable as I can be so I can make the right decision.