Hi..yeah, the diagnosis sucks for sure...I felt the same way, but because I had a great doc, it was much better.
Your goal shouldn't be to go off the meds according to the doctor..... tapering to a maintenance dosage should be the goal. That's of course based on my experience...Yes, I tried to get off the meds but eventually flared and it was better to do maintenance.
Besically...your butt rules. If you taper too fast, you'll know soon enough. I've done lots of shedules with tapering..from slow, slower to fast and faster...and whatever my butt decides is what I go at.
Where in the colon is your UC located...throughout or limited?
You are on a high dosage of Lialda...you can eventually taper to a maintenance...
What were your symptoms when you flared before diagnosis?
The bleeding means your tissue is fragile and once that stops, the inflammation still has to go through the stages of healing. So, once the bleeding stops, it doesn't mean your flare is over.
Hang tough...patience will truly be your friend.
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux); Effexor XR 75mg(depression); Pulmicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!