It's a tough surgery. Much like you I had a pretty easy time healing from surgery #1 aside from the fact that I was simultaneously healing from the flare from hell that had me homebound and hospitalized for several months prior. Surgery didn't hit me very hard but it took about
eight weeks to bounce back to an acceptable level of energy for getting around, working, doing chores, etc.
Surgery #2 was different... man... it was painful! Really painful. I hope you have an easier time than I did. I didn't have complications really but I do think I had a harder than average time of it. My first surgery was done entirely laparoscopically (except for the stoma of course), but I had a horizontal incision to form the j-pouch and that was super super painful -- for weeks afterward it felt like I was being stabbed there when I was active. I also had a fair amount of tenderness and achiness right there in my butt -- makes sense since I literally just had something STAPLED inside!
Likewise, the loop ileostomy is a total ****** (not like your real ******
). I had my first and only blowout with the loop ileostomy, necessitating a full wafer change in a public restroom in the middle of dinner. about
9 weeks post-op my stoma is going through a second phase of shrinkage so my wear time has been reduced from 3-4 days to 2. I've managed to avoid another blow out and major leakage by being meticulous with my equipment, changing frequently, and wearing an ostomy belt, but I don't have flawless skin the way I did when I had my end ileostomy. It also took me quite a long time to figure out my routine for "pausing" output in order to change my wafer. My end used to dribble liquid non-stop in the mornings, so I always changed in the evening before dinner. NO GOOD for the loop -- must be done first thing in the morning along with two Imodiums and 4-5 marshmallows. Even so I've still had a couple of frustrating mornings watching my stoma dribble liquid into a plastic bag, waiting for a lull so I can slap on a wafer and go to work.
Last major complaint... my surgeon used about
a foot of small intestine to make my j-pouch, and there's another three feet connecting the bottom of the loop ileo to the j-pouch. That means 4 ft or roughly 20% of my small intestine is out of commission. That means... I have a LOT of output. My output was pure liquid when I left the hospital. I've worked my way up to a regular schedule of six Imodium per day and that slows things enough that I don't have to worry about
dehydration. I still empty pretty frequently and it's a hassle. If I have a drink with dinner, I can be pretty much guaranteed that I'll have to get up to empty 2-3 times in the night. Without alcohol, it's at least 1 time per night. The best I've experienced is not needing to get up to empty until 5 AM or so.
OK, so... the good... I really did bounce back a LOT faster from this surgery. It shocked the heck out of me because I felt absolutely horrible for two weeks afterward. Just miserable and terrible and weak and awful. But a week later I was feeling pretty good... and a week after that I felt pretty much normal. So that's twice the speed of my recovery from surgery #1, and a much tougher surgery to boot. Also, psychologically speaking this surgery was important to me. I remember when I woke up after surgery thinking "there is a j-pouch inside me now." It didn't really CLICK for me that my ileostomy wasn't permanent until that moment.
You will almost definitely experience some mucus discharge from the j-pouch, so you'll start to learn the feeling of expelling something from the j-pouch (very different from regular pooping!) and you'll also start to learn the feeling of using your sphincters to hold it in. I was very, very lucky because I've been completely continent with my mucus since Day 1. I wore a pad for a few days in the hospital because I didn't feel totally secure while I was walking around, but I was able to dispense with that pretty quickly. In fact, I found that my sphincters work in a totally crazy subconscious way -- I
can't empty my j-pouch unless I'm sitting on the toilet, and usually not without peeing. To be totally honest I felt an "urge" to empty my j-pouch once when I was lying in the hospital bed on a pad, and I was curious what would happen if I "let go" (knowing I was on a pad and that it would only be mucus), so I did... and nothing happened. I actually couldn't let anything out without sitting on the toilet! Crazy stuff.
Well, I hope I haven't scared you terribly. Life with the loop ileo hasn't been a walk in the park but it's been livable. I've returned to work, I can go out to eat, do tons of walking, go on weekend trips, etc. I was a big exerciser pre-UC and also after the first surgery, but I haven't felt up to it this time around so I'm not forcing it. I feel that with so much of my small intestine offline my body is having a hard time getting adequate nutrition and I shouldn't tax it further with tough exercise -- walking is enough. Speaking of, I lost 15 lb during my hospital stay for Surgery #2 and have only gained back about
6 lb. From what I've read most people have
no trouble gaining weight after takedown so I have that to look forward to
It's a hard road, but you'll get through it. The time between surgeries is for you and you alone -- to heal your body and rest your mind. I am preaching because I need to take this advice myself right now
Best of luck to you!