Question for Quincy

Hey Q,

I noticed on another post that you mentioned that you don't use the word remission just control w/ meds.  Do you mean that your symptoms constantly fluctuate and you are regularly adjusting your meds?  Reason I ask...I am never (well at least in my little over 2 yrs diagnosed) been in a place where I am only on rectal meds a little.  Sometimes I can go every other night w/ the Rowasa (with Canasa on the other day off) and that can last a few weeks/month or so.  Than seems like I am constantly adjusting...back to Rowasa nightly...sometimes a steroid supp for a boost.  So wondering if that is more like the way of life for you.  It does seem that some have more solid remissions, just taking oral asa and rectal meds 2x week just as a preventative.  Just fyi, I also take 2 Lialda/ fiber/VSL3.  Trying to keep realistic expectations...and I know you have been at this for a while :)

Thanks,

B

PS Others can feel free to pipe in too!!

If you find that you need rectal meds nightly (or anything more than the twice a week "standard" for use in remission that I found in some literature) to maintain remission, I really don't think it's any big deal.  It's what YOU need.  To me, remission means that you are not having symptoms and are not on pred. 

If you don't like being on rectal meds that much, you could try upping your Lialda dose to three or four to see if that helps.  I am on four Apriso daily (the maximum dose).  However, it is a lower amount of mesalamine per pill than Lialda. 

I wouldn't try to be like me.

Well, I'm perfect and all, so maybe you should be (BIG HAHAHAHAHAH!!!!) :)

Anway, just remember that I seem to be one of the very, very, very lucky ones when it comes to controlling UC. I don't have to watch my diet all that carefully (I do limit processed foods and strictly avoid MSG and artificial sweetners, but I ate like that pre-UC) and have been in a really solid remission for over two years now. Sure, I had that perianal abscess and am now hoping my fistula heals well, but none of that seems to be really related to UC, other than the enema tip maybe causing the abscess in the first place. I really do wish that everyone on this board had the same luck that I do.

However, like you said, nobody can predict the future. I may slide into a horrible flare over the next few months and you might be able to reach the "magic" twice a week mark with enemas.

I'm on medications consistently since about year 2.
The scheduling is either nightly when flaring or tapering to maintenance and remaining at a specific dosage for prolong periods of time.

Since fruitgirl's influence of twice weekly, I only go that far and not once a week as I used to.

I don't say I'm in remission, but if anyone asks, depending on my state, I'll say either yes or no. It's not a state I aspire to as in a finality.
Either I'm flaring or I'm better so I taper to a schedule I think will get me back to every third night or twice a week. For me, that works well.

Rectal meds serve a purpose, and I do not believe that just taking orals will do it.

I don't consider taking meds a failure, but I wouldn't do all meds if I suffer from side effects worse than flaring. I'd have my colon out and be done with that part. Of course, no guarantees regarding problems without a colon...crap shoot.

I also want to be clear that I also have a associated liver disease, either PSC or PBC..meaning either UC-related or autoimmune related. My goal is to keep my colon quiet and my asthma quiet so that my body maintains some non-reactive balance in order to hopefully keep my liver quiet as well.

If that means using meds, so be it. I'm also mentally intolerant of symptoms other than normal, so I use what I need to not be focusing on that. I've never had accidents, I have never had to use a public bathroom except for once while at a restaurant and twice at work for UC symptoms. Not a bad record.

So, remission is just a word...I can be considered to be in perpetual remission according to the clinical sense, maybe even when I believe I'm "flaring"....I don't wait for the obvious according to others' criteria. That, I've learned over the years.

q

Hi...how long is the longest nightly....and then the taper to every second night..how long has that held for you?

You can do a steroid supp on the night you don't do the enema when you're tapering.

I've don't lots of different tapers from really slow to really fast.

q