Hey girl... so many answers to your questions so I might stop by later with more... but just to begin --
If you're getting the j-pouch you are keeping your anus! So that's surprise number one
You will also be keeping a very small "cuff" of rectal tissue -- it's needed to maintain good continence when your j-pouch is hooked up.
A big surprise for me was that my appendix was removed along with my colon! If you know much about
anatomy you'd know that this is required (the appendix is connected to the colon, keeping it would be like keeping your thumb when you amputate your hand), but it really didn't occur to me until about
a week later when the surgeon pointed to my appendix on a photo of my removed colon. So that's one less thing to worry about
in the future, if you still have yours.
I try to be pretty matter of the fact about
my stoma. It isn't pretty or sexy or anything like that, yeah it's kind of weird, but you know lots of things about
the human body aren't gorgeous. All things considered I don't think it's any grosser than pooping out of your butt, it's just in a different spot. It's 100% normal to be overwhelmed when you wake up and see it. As your guts wake up and it starts to move a tiny bit (it sort of 'pulsates' very subtly, kind of like it's 'breathing'... no one but you will notice it and you don't feel it, but if you're staring it you'll probably notice it) and starts putting out gas and liquid, that will be another surprising feeling! Sorry to say there's not much you can do to prepare for that because it's so unique and new, all I can say is try to stay positive. Much easier to deal with your stoma if you can see it as your little 'friend' instead of your enemy!
Become BEST friends with your stoma nurse and make sure you know how to contact him/her after you leave the hospital. You will definitely have questions and there are a couple of things that even the people on this board can't answer as well as your nurse
Walk as much as you can. You'll heal faster and wake up your intestines more quickly and just feel better. Try to also spend some time sitting in a chair instead of lying in bed all day. On the flip side, you need rest so don't fight it -- sleep! A lot!
Bring a notepad and pen and keep them at your bedside for writing down questions and answers for/from doctors. Your surgeon will probably 'round' early in the morning (like 6 AM) and I find that's a terrible time to try to remember all your questions and concerns, or to remember what they say back to you.
Chew your food, a LOT. Eat slowly. Try not to talk while you're eating -- it tends to make people chew less and swallow more air (leads to gas).
As far as emotional preparation... the night before your surgery, lie down and close your eyes and visualize what it will be like to wake up after surgery when everything has gone perfectly. Imagine lying on the stretcher and
opening your eyes, hearing your surgeon say that everything went well, seeing your family visit you in recovery, being wheeled up to your hospital room, etc. Imagine the relief of not having to jump up and run to the bathroom and not having UC pain and stomach cramps. Visualize a great outcome and focus on the positive! There will be pain and challenges ahead whether you worry about
them or not. Prepare to face them by building up your strength with positivity now