I'm having three steps, and although I'm not finished yet, having been through steps one and two I am SO glad that I am doing three steps. Step 2 was a very tough surgery that was hard to bounce back from and, frankly, demoralizing. If I had had to face it when I was at my sickest I can't imagine how much harder it would have been.
Whereas, after step 1, although it was difficult, I recovered relatively quickly. I was severely malnourished, underweight, etc and after Step 1 I was able to eat a variety of foods without fear for the first time since before UC. The end ileostomy (the kind of stoma you have after Step 1) is usually easier to manage than the loop ileostomy (the Step 2 stoma) and that has proved true for me as well. I now think of my recovery time after Step 1 as sort of my "vacation" -- it was tough but not THAT tough, I got to eat a lot of different foods without worry, I returned to work, I had fun with my friends, etc etc. Then I had Step 2... and now I'm having the sort of less fun experience that most two-steppers talk about when they talk about the time between surgeries. Obviously I am still 100000x better off than I was before surgery, but I'm struggling with a high output stoma, taking 8 Imodium per day to stay hydrated, etc etc.
Absolutely make friends with the stoma nurse. Make sure you have his/her contact info so you can make appointments or call or email questions as they come up. My WOCN told me in the hospital "There is no level of irritation that is NORMAL: your goal should always be perfect peristomal skin." I go by that philosophy and as a result I've never had any really painful stoma issues. If I start to see the beginning of any irritation, I make an appointment to see my stoma nurse, as simple as that. I would much rather go see the nurse than wait it out and possibly end up with weeping/ulcerating/painful skin.
Walk, walk, walk as soon as you can after surgery. Don't grit your teeth through the pain, but do your best to minimize the amount of painkillers you take. Make sure you stay hydrated. Gatorade is NOT good for staying hydrated -- it has way too much sugar.
Bring a notepad and pen to the hospital and keep it by your bedside (it will be very hard for you to reach for things yourself for the first few days after surgery) -- use it to jot down questions for the surgeons when they round, as well as their answers. If you're supposed to get any medications on a schedule (for example, if you'll be getting IV steroids), use an alarm on your cell phone to set a reminder for the next dose. Everyone is trying their best but unfortunately sometimes these things can fall through the cracks. I wasn't paying attention and a nurse misread my sheet and never gave me my steroid dose. I was on the IV equivalent of 40 mg prednisone and I was almost 20 hours late in receiving my dose. I'm sure you can imagine how horrible that was, and I only got it when I did because my mom was visiting and realized what was going on. If I had been alone, I would have had a really rough time.
I know saying "don't be nervous" doesn't do any good so I won't bother. One of my friends told me the night before my surgery I should close my eyes and envision what it would be like if everything went perfectly. Waking up in recovery and seeing my family, hearing the surgeon say that everything went well, getting wheeled into my room, relaxing, not having to jump up and run to the bathroom! Keep that positive thought in your mind and really picture it. That will help with your nerves.
As for schedule, I waited 15 weeks after my first step, and will probably be waiting 13 weeks for takedown. My surgeon likes to have at least 12 weeks between stages. I want to get it over with too, but I like having some time to enjoy life and feel "back to normal" in between, too.
Best of luck!
