What is remission like? Will I know I'm in it?

Hi all,

I'm so curious--after suffering for roughly 3/4 of a year now (diagnosed after long-term antibiotics wiped out my colon in my 2nd trimester), will I actually *know* when I've achieved remission? I mean, I'm soooo much better than I was...when I was hospitalized in February, I was having around 20 bloody episodes of diarrhea a day. Now I'm going 2-3 times a day. Which is SUCH an improvement, I know...

But I still feel sooo far from *normal*. I still have urgency issues; sometimes I'm pushing and pushing and it's just little globs of blood and mucus coming out (ick, I know, but nothing I can't share with you folks!) My poop usually looks like tiny, skinny, blobby fingers. And most days I feel like I have to *go* all day long--from morning til night--I have that weird, *expectant* feeling down there in my rectum...like a weird pressure. Even when I'm not going. Basically, I just never feel right, even on my best days.

But maybe this is remission for me? How will I know? My symptoms are the most manageable they've been in 3/4 of a year...but they're not great. Current meds for me below:

Apriso 4x morning
Prednisone 20mg (still working on a taper)
VSL#3 DS packet daily
Florastor daily
Rowasa enemas nightly
Remicade (just finished 3rd treatment)
Imuran coming soon (just finished blood tests)

Since my biggest issue is urgency and rectal pressure/tenesmus, I am wondering if I should ask for a hydrocortisone enema in addition to my Rowasa enemas. And would that help me taper off the oral pred faster?

I went to my GI this week and was explaining my symptoms...he is concerned that I am still occasionally (not always) having blood/mucus and thought I should increase my pred back to 30. Um, no. Gad no. Can't do that. Hate the stuff with a p.a.s.s.i.o.n. I have to get off of the pred!!

For those of you in remission, how do you know? How much better does it get?

Thanks,
Lisa

I define remission as where the natural "me" comes out, and I can laugh and smile at things during the day and make spontaneous plans to do fun things.... Non-remission is where i have to force myself to smile and where I have to think very deliberately, like a robot. In terms of symptoms, 0-3 formed bowe movements a day and nothing more than slight pain is remission.

i remember when i was pregnant and i was wondering about going into labor, how will i know if its labor or false labor.... and everyone said, when you're in real labor You'll know. 

well.  remission is like that.  when you are in remission you will know.  you are not in remission now. remission is where you were before you got uc, no blood, no urgency, no pain, fewer bms.  You are doing better but not in remission.  The colon can take a while to heal up.  They say the rectum is the last and hardest to heal. 

the hydrocort enemas might help. maybe you could still do the rowasa at night and then in the am, add the cort enema or supp.  doubling up like that can be helpful.

also, have you ever tried psyillium seed powder?  do a search on this site regarding them, i think they are amazingly helpful, maybe it can benefit you

In my opinion, you will know you're in remission because you won't have symptoms of UC. You should feel "normal" or close to it.

So, then I guess the question is: how long does it usually take for the colon to heal itself enough to be in remission? I'm already on a med cocktail; I don't really feel like there is anything else to add on the end. I am checking into the psyllium seed powder (thanks for the suggestion) and have ordered some from Amazon...I am eating small bits of *non-threatening* foods throughout the day as not to overload my poor, wrecked colon...

Will remission come gradually? Or will it be a sudden *oh my gosh* feeling? I feel a lot better, but still so far from normal...

I'm going to call my GI and ask *again* about the hydrocortisone enemas. I think they will really help my urgency. I don't want to replace my Rowasa enemas, I just want to add the other one. Do you think the hydro enemas will also help my internal hemmies?

Thanks so much for your responses; I really appreciate your time and concern!

Ta and take care,
Lisa

There's no average healing time, unfortunately. We're all different in how extensive and severe the inflammation was to begin with, and we're all different in how well that inflammation responds to treatment. When I started prednisone, it was pretty much a sudden stop of the symptoms. By the second or third day on it, I was pooping "normally" again. I still didn't feel "normal" because I'd been so ill and the flare took so much out of me. I didn't consider myself to be in remission, though, until I was totally off pred.