Hi....basically, the learning process was when I was tapering. By tapering, it's in actual effect the maintenance.
Early on, I realised that I couldn't get off the enemas or off the Asacol...so, that was part of the up and down process the first few years.
I pretty much plan things out on my calendar. I mark out nightly for sure 3 - 4 weeks. I've gotten cocky in the past year and tapered quickly...but that's the process I'd chosen, humbling me once again.
No biggie. back to square one.
OK, back to the calendar....I add if I have to, white-out as needed..etc.
I NEVER leave anything to remembering...documented is better for me, as well, I can look back as to my flares, etc.
When I'm normal once again, I then mark every second night out on the calendar for 3 weeks....change as necessary. The same process applies...if I'm normal for that length of time, I may choose to go every 3 weeks, or stay another week at every second night then mark every third night for 3 weeks..etc.
My earliest symptoms are stomach discomfort that's consistent related to lots of gas and inconsistent bms kind of like constipation, play-dough (coining Sherry's descript
ion)bms, thin bms, then increased bms/frequency, urgency, rectal discomfort, throbbing and of course white-knuckling bms. Diarrhea would usually come quickly during the first few years...but since my flares are now limited to low in the rectum, the symptoms are different than they used to be. Probably because I used to hope the symptoms would disappear, as well, I didn't know what to expect until the most obvious which was diarrhea and bleeding.
I don't mind being called the rectal med queen....Bob actually used to call me the high priestess of rectal meds...lol!
The "bottom" line is whatever is consistent, try to assume it's maybe "something". You will get better at it as you go along.
The tapering method is really to find your maintenance....for me, that varies depending on what's going on in my life.
Increasing rectal meds is how I deal with flares.....the oral meds, I've only increased to 8 daily once in 20 years to deal with the flare, then back down to 6 daily. I don't worry about
the oral dosage unless there's something wonky. I only take them twice a day...that way I don't forget (OK, I've done so on occasion, but not as I would if I were taking them 3X daily).
Unfortunately, experience is your best teacher....as you look back, you'll realise your symptoms and what they mean. Food sometimes can mimic UC, if it is food, the symptoms won't last past a day or two.
Hope this helps....if I've forgotten anything or you need clarification, ask. I tend to have verbal diarrhea.
Oh, using the rectal meds on a constant basis to decrease/increase....isn't a failure, it's just listening to your symptoms and dealing with them as such.
I'm a med-lifer...you may not be. But you'll have to find out what your UC needs in order to keep inflammation down to a minimum for as long as possible.
I also see using 5ASA meds as a prevention of cancer....I also have UC-related liver disease, both of which can increase the likelihood of cancer. I use them as hopefully a prevention.
I also believe that keeping my UC inflammation at a minimum will also help keep the PSC acceleration to a minimum as well.
A lot of hopes in a type of med...but I can use it, and to me, that's better in the long run....but it takes commitment and acceptance of that they're what's needed.
*Heather* Status..Asacol (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux); Effexor XR 75mg(depression); Pulmicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!