Achieving 100% remission - how long to clear "last mile" of urgency?

I feel like I'm very close to remission but am not quite there yet (still have some urgency) and hoping for feedback from others who may have followed a similar path.

- At my worst my symptoms included: extreme urgency, 10-20 loose BMs / day, blood and mucus.
- Have tried many combinations of different mesalamines and steroids but what's worked best for me has been 4x Lialda / day + Mesalamine enemas (Rowasa/generics). With this combination I'd get 1-3 well-formed BMs / day (closer to 1-2), usually 1 very shortly after waking up and another a few hours later. No other symptoms (no blood / mucus, etc) other than severe urgency with each BM.
- Started seeing a new doctor (in NYC, highly recommended on this forum) earlier this year and he added 4 sulfasalazine / day + 2 hydrocortisone suppositories / day to the existing Lialda + Rowasa regiment. about 4-6 weeks with this new combination I'm the best I've ever been: same progress as in the bullet above, but sometimes I have zero/extremely mild urgency for BM #2 / 3 (still pretty severe urgency for the first BM of the day though).

So I'm the best I've been but still have urgency with the first BM of the day (this is a problem as it affects when I can leave to go to work in the morning) and the later ones in the day are a bit hit or miss. I had a flexible sigmoidoscopy earlier this week and the Dr. reported things are looking a lot better and inflammation has become milder and only in the first few inches of the colon. He suggested I keep doing what I'm doing.

Some questions I have are:
- Has anyone else been in a similar position and later achieved full remission? How long did it take?
- Is the urgency with BM #1 due in large part to there being a suppository and 60ml of enema solution in there from the night before, or can I expect to have better control / reduced urgency as I continue improving? I'm wondering if I cut back on the enemas (as I get better) if that will reduce the urgency, or whether it would instead increase it because I'm no longer treating the area.. kind of a catch 22.

Any feedback is appreciated!

How long to clear the last bit of inflammation is the million dollar question (wait a little longer to heal, weeks, months, may require stronger medications to achieve 1 bm a day without urgency). No one knows the answer, it varies person-to-person and depends on your medications being strong enough, the severity of your uc, etc.

Rectal inflammation is darn stubborn and it controls urgency. Healing takes time, I'd wait it out a little longer with the same medications, then discontinue the steroids and see where you stabalize. I hope you remain in the same state once discontinuing the steroids as that's another variable. You're pretty much maxed out on the meslamines, so your only option is to climb the medication ladder to immunosuppressive medications (6mp, Imuran, aza) if you get worse after stopping the steroids.

The above about suppository over enema is correct, except that suppositories have 1gram of meslamine, rather than enemas 4grams. Switching is less medication and could make your symptoms worse.

sherbear46 said...
Just my opinion but I think suppositories may help more than the enemas since you only have a few inches of inflammation. The urgency will reduce as you continue to heal and is usually one of the last things to go.

Steriod enemas and suppositories aren't meant to be used long term so be careful with those.

Yes agreed. Just last week we upped the suppositories to 2/day from 1/day so I hope that helps. As far as long-term steroid use I was under the same impression and asked my Dr. about this but she said that it's different for topical steroids like suppositories than it is for ones that are administered orally, as the former are less potent and can be safely used long-term. Though I've heard mixed things about this and should probably ask the primary doctor next time I see him.

iPoop - great points. I'm lucky that I have most things under control, just dealing with the last stubborn part. We're getting close without going up to the next class of drugs so are trying to continue with this route and will be adjusting as needed.

imagardener - thanks for the great tip. I see good options online and will try them out.

Thanks everyone for the feedback.