Posted 9/19/2010 3:14 PM (GMT -6)
I have been retaining the bedtime enema overnight, and the morning enema for the entire day most days until bedtime. I doubt I will be able to retain a rowasa enema all day. Somehow the steroid ones just seem less watery and easier to hold for long periods of time, although putting it in when your rectum is inflamed definitely burns a bit, but that calms down within 15 mins or so. I wonder how many people feel the burn and can't take it, and lose out on this effective treatment.
Sounds like you take some time to taper off and don't rush, I think that is the key. I can feel that the steroids are getting into my bloodstream, probably similar to about 12-15 mg's of oral pred based on hunger, mood, etc, so you know they are doing their dirty work, along with the desired effect, so that makes you want to get off them, but going too quick can backfire as you said.
After about a week of the steroid enemas, I still feel like there is a bit of swelling in the rectum. It is hard to tell about mucous since the enema liquid itself is the same color and similar texture to mucous, but the blood and urgency are completely gone. I haven't talked to my doc yet about tapering, but I will probably go another two weeks for a total of three at full dose, and then start the gradual taper.
Thanks for the helpful info! Much appreciated.