quincy

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 description)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.

quincy

Thanks, quincy, for the response and for taking the time to give so much info! I've pretty much accepted the fact that I'll be taking medicine every day for the rest of my life to keep my UC in check. If that turns out to not be the case, then great! But, I'd MUCH rather take medicine every day than deal with flares.

It does make a lot of sense to increase the rectal meds first, since flares start in the rectum. Also, my doctor said (as I'm sure you know) that the rectal meds are so much more effective than the oral meds. I just wish a rectal med existed that could reach the entire colon! :)

fruitgirl said...
Thanks, quincy, for the response and for taking the time to give so much info! I've pretty much accepted the fact that I'll be taking medicine every day for the rest of my life to keep my UC in check. If that turns out to not be the case, then great! But, I'd MUCH rather take medicine every day than deal with flares.

It does make a lot of sense to increase the rectal meds first, since flares start in the rectum. Also, my doctor said (as I'm sure you know) that the rectal meds are so much more effective than the oral meds. I just wish a rectal med existed that could reach the entire colon! :)

You're welcome.  Rectal meds wouldn't reach the entire 5 - 6 feet of colon...unless you used a gallon of medication while standing on your head.  I'll take just the lower part small amount of med, thank you.  Takes me less than 10 seconds to insert...

You might be to the point of using maintenance enemas once a week....if that's the price, then be it.  Some can get off the rectal meds...it's worth for you to try in the future.

You might be able to lower the Asacol to maybe 8 if you take it twice a day....it all depends on what you want to lower.

When was your last C-scope?  What was the outcome?

q

It's definitely a learning process....and I would suggest that if you are to taper the oral meds, you do so when you're staying at a steady rectal dosage and that you've been normal for a while.

But, if you taper by one pill a month...you will have more control and probably less symptoms. For pancolitis, I would think that 8 daily would be optimum. at least you can increase by two if needed as needed of the rectal meds aren't doing the complete trick.

As well, with 12 being the highest dosage, if you have wiggle room to taper and increase there as well...that's a good thing.

Keep us posted as to how you're doing.

q