Posted 8/16/2008 5:40 PM (GMT -6)
I realise that everyone's different, but I thought I'd share what seems to be working for me. Forgive the lengthy prologue, but wanted to contextualise. I was diagnosed November 2007 - proctitis, 10cm moderate - urgency, rectal bleeding, no significant pain but all unpleasant as you all know. I was initially given Canasa suppositories to use twice a day which helped a bit, but not enough. Then I added Digestive Advantage Crohns and Colitis probiotic which seemed to help. I also made some obvious diet changes - cut out coffee, sugars, red meat, processed food as much as possible, alcohol. All seemed to make things a bit better, but weren't really getting me back to normal.
I switched doctors after getting frustrated at the minimal communication I had with my first GE. The second encouraged me to go onto Asocol - 6 twice a day - to get into remission, despite my aversion to the idea of medication. This achieved a significant improvement - no more rectal bleeding and down to about 3/ 4 bowel movements a day - still some stomach 'sensitivity' but really manageable. After six weeks of that I switched to the maintenance dose (2x2 per day).
Recently I was in a health food shop and picked up aloe vera gel, a high concentration fish oil and a multivitamin that I'd seen recommended by another UC sufferer called Animal Pak (it is intended, funnily enough, for body builders). I've been taking 2 fl oz of the aloe vera in the morning, then one fish oil and one of the Animal Pak things with dinner for about a week now.
The improvement with the health food products was immediate and fairly significant - after 1-2 days I feel completely normal with the exception of having to go to the bathroom twice in the morning - but I think that's because I insert the Canasa after the first BM and then go again before leaving the house because I don't feel comfortable going out without expelling the Canasa.
Of course, it could be coincidental, or I could have made some other change I'm not aware of. I also don't know which of the three, or what combination was helping. But anyway, of all the things I've tried, these three have coincided with the biggest improvement with the exception of the Asocol.
I will at some point experiment with removing each one of the three to try to isolate which one it is. But I'm reluctant to, because it's nice to feel fine and be able to eat what I want (although I'm still too nervous to try coffee - I may do so soon though if I get my 'confidence' back, if you know what I mean).
Lastly, thanks to everyone who's shared experiences and ideas on here. It's hard to accept that this disease is so mysterious - you'd have anticipated that figuring out how our gut functions would have come before manned space flight and string theory really.
Anyway, please keep sharing.