I am 10 years post takedown (2006) and the first 5-7 years were ok. I was able to travel all around the world working and pretty much ate what I liked and lived normally. I still had 4-5 BMs a day and I am sure had bad times which I didn't dwell on, so my memory of them is dim.
The last 2-3 years though have been progressively getting worse and I am restricting my diet, avoiding obvious food like onion and lactose. For the past 6 months though, I have been dealing with pain and discomfort and I am on a daily dose of 6 to 8 x 2 - 500 mg Paracetamol + 30 mg Codiene to counter the pain, supplemented by slow release Oxycodone, now day and night, as well as the Immodium and other drugs to minimise output, both solid and otherwise. I am living like I was with UC for the 22 years prior to my surgery, taking a cocktail of drugs just to live a normal life.
I am now committed to going back to a permanent ileo, but my doc wants to leave the J Pouch in, in case I want to reconnect later. However I understand there will still be some output from the pouch in terms of mucous etc, but no actual poop.
There is a lot of positive stuff here and I am encouraged by this, knowing that life will be better afterwards, however I would like to hear from anyone who has had a bad experience from the reversal of the j pouch, along the lines of leaving the pouch intact as opposed to removing it entirely and joining the Barbie (and Ken) butt club. Also what about adhesions after the reversal, as I am told this is where a lot of my pain is coming from now.
My doc was reluctant to do this for the past couple of years, but has now relented and will do it when I set a date. I just want a balanced opinion from those who have actually been through it!!
Thanks for all the posts so far, and I want to do this within a month or two.!!!