And Charlotte, I definitely have surgery questions, as I've thought about it many times. I'm sure there's probably another thread with the answers, or a new one could be started, but I have so many questions as to what life is like after surgery. Such as- what type you had, how long it took to recover, how many bathroom trips a day afterwards, can you eat what you want, etc., etc.
I think it's great to start a new thread. The short answers, in case you or others return to this one, are: I had a two-stage surgery that was laparoscopic. It is by far the most important thing to find someone with extensive experience doing the procedure at all, but if your insurance covers someone who is very experienced performing it laparoscopically, there are documented reasons to choose to do it that way over and above having fewer scars (including generally reduced healing times, need for hospitalization, painkiller use, and instance of ileus, hernia, and obstruction). Those are all on average; nothing is guaranteed, but I personally felt that it was worth traveling to get the possibility of these advantages, and had both surgeries at Mayo in Minnesota (I live about
a two-hour trip from there by plane).
If you need surgery to get you out of the hospital and there is no one there with adequate j-pouch experience, it might be best to have the colectomy itself only (make sure they leave enough rectal tissue to attach the j-pouch) and not get the pouch done until you're healthy enough to get near someone who does hundreds a year. (That's the scale of experience that constitutes "very experienced.")
I was out of work for 2-3 weeks each time. I took no painkillers at all. I eat whatever I want. Sometimes I use the bathroom more times because of what I eat, but I really can't say how many times, because it's never urgent and so it doesn't really interrupt my life. It's probably most like your need to use the bathroom to urinate now. If you let it go way beyond the time when you knew you could go, it will get uncomfortable, but there's plenty of warning. I can easily hold it for a couple of hours.
I take probiotics, Metamucil, and Imodium (though lately I've been able to back off the Imodium some). Frankly, the sickest I was in the entire process, including both surgeries, was getting on (and then off) prednisone. I would have done anything to have avoided it again, but "luckily" I got dysplasia and the decision was made for me. I wish I had done it sooner.