Remember that all of us care for you. Most of the people on this site have been at your stage before. I'll be there next week. From what I have read, you have a good chance of joining a healthy survivors group! Our thoughts, prayers, and good wishes are with you. You WILL get through this.
Although I'm not exact about how long a person can last before needing to empty, I do know that yes, you will need to set an alarm in order to wake up and empty, whether it's the neobladder (which is like normal voiding) or to catheterise the Indiana pouch. I think I've heard folks say they can go longer than 2 hrs at night, but not much. The pouch mustn't get over-stretched or that could cause problems.
The only option that doesn't require waking up is the external pouch, or an ostomy. Nights can be dealt with using a larger (night) bag. This surgery is losing its popularity among uros these past few years, or so it seems, as the newer techniques are becoming more widely known. Although most people are horrified at the thought, everyone I know who did get this older procedure done are satisfied with their quality of life (at least the folks I"ve communicated with...of course there are exceptions and someone out there surely hates their ostomy..).
All this is new to you, you haven't had much time to network with others and learn more. At this point in time you must be absolutely horrified about all of this...but I promise you, human beings are incredibly resillient, adaptable creatures. You're young, you will get through this and you will heal. It might go faster than you think, I sure hope so for you.
I wish you an easy time of it, and would like to know what the path report says when it's back. That's the number one priority, that the cancer is contained in the bladder.
I am going into hospital on Monday for a radical cystectomy with internal pouch diversion.
I forgot to ask at my pre admission appointment what happens at night.The stoma nurse went through all the details about needing to self catheterise every two hours to start with once the stents are out.Do you still have to get up every two hours during the night to do this?
Its just todays panic and I really hope someone can help with the answer .I am hopeless at night so am worrying I am bound to do myself some damage.
Thanks C x