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Posted 2/22/2016 3:42 AM (GMT -5)
Some of you may remember me. My disease wouldn't respond to any medications so eventually I went to Cleveland to remove my large intestine and ultimately removing the disease. That was step 1 of 3 and I have my next surgery in a week from today (2 of 3). I am doing very well, gained all of my lost weight back. I obviously don't know what the future holds for me for the next two procedures and once I start going to the bathroom normal again, but I can expect it to be better than dealing with the disease. I still expect occasional complications when all the surgeries are done and I have the J pouch but after dealing with the ulcerative colitis symptoms, anything is way more manageable than that.

I do have some questions for any of those who have gone through the three step procedure..

1. What can I expect differently post op of surgery 2 that wasn't the same as surgery 1. Pain wise and recovery wise.

2. (Sorry in advance for this question) I have anal seapage now and still have occasional urges throughout the day to use the bathroom and squeeze even though I know poop won't come out. Sometimes some mucus balls will come out and when I wipe there's definitely discharge there. My questions with these things are, is urgencies always gonna be there even though I have an ostomy bag? I thought they went away after a few week post surgery but three months later and I still have them. I notice caffeine makes it worse. Also the anal discharge, it gets my boxers nasty and I carry around a stench with me when I'm in my underwear relaxing. And if I don't keep a piece of tissue Inbetween my cheeks it gets on my boxers.

Thank you in advance for the replies!
Posted 2/22/2016 5:44 AM (GMT -5)
I had a two step procedure not a three so my first step was the colon and rectum removal, j pouch creation and temp loop ileo. That was rough! As you know, your step two will be the rectum removal, j pouch creation and your end ileo will be changed to a loop ileo. So since more is involved, you may notice recovery a little tougher. Maybe not....I'm just saying that because most people feel the second step is the hardest. But since you've already been through step one, you know what to expect for the most part. I always felt the doctors and nurses did an excellent job where I was keeping my pain in check. You will probably notice that the loop ileosotmy is more of a challenge to deal with.

I didn't have the anal seepage you speak of. I did pass mucus quite a bit but I was always able to pass it on the toilet. I would feel some pressure build up and then I would go to the bathroom. What your describing is not uncommon though. And once you have your takedown and are connected things typically settle after your body starts adjusting to it's new plumbing. I would suggest doing some Kegel excersises to strengthen up your pelvic muscles.

Best wishes next week with your second step. Let us know how you are doing. :)
Posted 2/23/2016 4:50 AM (GMT -5)
Thank you for your reply BBUC. I'll uodate after my surgery next Tuesday.
Posted 2/23/2016 8:21 AM (GMT -5)
Hello-

I had a temp ileo for 10 weeks had the same thing happen as you are. I also had stool come out at various times too. Doctors told me that it can happen when you have a loop ileostomy. Scared the heck out of me.

You are right, there is not a lot of info out there on this issue. It would happen a few times a day, however I always had to push to get these stupid mucus blobs out. Hang in there!!!
Posted 2/23/2016 6:54 PM (GMT -5)
ByeByeUC was spot on.
I personally found the 2nd recovery easier just because before my 1st I was severely dehydrated and malnourished, however the 2nd was pretty rough too. Pain wise, I found there wasn't a big difference.
And as for your concern with anal seepage, I know exactly what you mean. Not only would I get the urge multiple times a day to pass mucus, but would occasionally have uncontrolled leakage as well (I found this to happen most often while asleep).
Good luck with your next step! I hope all goes well for you!
Posted 2/24/2016 11:54 AM (GMT -5)
I have had to pass a little mucos probably every 24 hrs. More if I were to have dairy or coffee espescially.
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