how do you define remission?

So.....it has been just over a week since I started Humira and I'm starting to wean prednisone. I'm nervous, as it has been my crutch through the last 6 weeks. Tomorrow I drop to 50mg-down from 80 a week or so ago. Last time we tried tapering, I flared bad!

Anyway- I'm new to all of this, but I have had a fantastic 4-5days. I can eat, still being picky, I have had enough energy to cook for myself, grocery shop, talk a couple of light walks on the beach and light yard work...I'm fearful it won't last, is that wrong!?

I guess my question is- how do you define remission? Is it different for everyone? A clear scope? Living a somewhat normal life? Off meds? Etc....
I am still having 4-6 soft BMs a day- not formed mostly mushy/mucous- but I can hold it if I'm out in public, etc...I would almost call this remission- I can live like this if I have to!

No no....I was 80 for about a week- it was the only dose that made the inflammation stop, dropped to 70 for 3 days and today is day 3 of 60. Tomorrow I go to 50 and then see GI on Wednesday.

I'm on Lialda, prednisone, humira, and potassium.
The rectal meds made me REALLY sick so I am not ready to try those again.
I'm more curious about what defines "remission."

I'm on Lialda, prednisone, humira, and potassium.
The rectal meds made me REALLY sick so I am not ready to try those again.
I'm more curious about what defines "remission."

Maybe a better question is, "what's a normal uc life?" Obviously different for everyone, but on average...a day in the life!?

I'm a big believer in life is a lot about attitude...maybe I will change my tune after a few years of this, or maybe I just feel good right now, but surely you have to enjoy the little things in life, the big ones are just few and far between. It's not a death sentence here...

Remission can be a dangerous word. As you can get depressed because you think you are in it then have a series of bad days, you slip out of it, because you can't achieve it, etc. Better not to dwell on it. Clinical remission can only be determined by your GI and it means you have a clean endoscope and all of your biopsies look normal (no sign of uc found, no inflammation etc.). Symptomatic remission means you have no uc symptoms (normal bms like 1-2 a day with no urgency, no blood, no mucus) but there are still some signs of uc are present during the scope or biopsies. There are people here who have one bm a day; they are in remission. Sorry, if you are going 4-5 times a day then you are not in remission you might be healing and improving but you just aren't there yet.

The biggest thing with a pred taper is to be alert if you regress. If your symptoms get worse after dropping your pred dosage then hold where you are at and contact your GI right away. As if you continue to drop your dosage in that situation you will return to a uc flareup state. Just be alert, look for blood, mucus, and increased urgency as those are red flags that you should stop the taper, as stated.

Nursemb23, I've been at this for 1.5 years and I have never once achieved remission. The first 1.5-2 hours after waking up are rough for me (some urgency, 2-4 bms, mostly formed bms, etc.) but then the rest of my day is normal. I just wake up a little earlier than most people to make sure I am empty, and ready to go about my day. Sure it is a bit of an inconvenience but as you say things could be way worse for certain. That's a typical day for me. I work without issues. I do the same things I did before uc ( hike, kayak, camp, xcountry ski, etc) I am just not the 1st person on the lake, trail, etc, and I always have some toilet paper along with me just in case lol.

always the internal optimist, eh poop man !

"I always have some toilet paper along with me just in case lol"

do you carry full rolls or just partials ? or do you unroll it and do the fold thing ?

soyman, I always recommend people carry emergency kits with them. Great for peace of mind, and it's the sort if thing you hope you never have to use. My wallet is always in my back pocket and it has a bunch of tp folded up in it (looks like I am rich with a bunch of bills in it lol). I have a ziplock bag in my car with a change of underware, wipes, and tp. Also have a pair of jeans in the car just in case. Old boy scout motto be prepared for the worse case scenario.


And if it ever comes to being chained to a toilet and no chance of improvement, then that's when you visit a surgeon, and evict the evil colon that's ruining your quality of life in that scenario. At least there is a way out, not all chronic diseases have that option.

haha no quite soyman, maybe that's the way you roll.