How long are your remissions?

Sherry's thread today ( https://www.healingwell.com/community/default.aspx?f=38&m=2137804 ) raised a question in my mind, how long are you remission (absence of UC symptoms, mostly pancolitis) after your prednisone or other hard medication regimen?

What is 'normal?'

I was quite astonished when Sherry wrote that she has been more or less flaring for the past 19 years, and mudua telling that s/he, 'this morning I had my first normal fully formed stool in 17 years.'

I expect to be in remission for a year or two after a prednisone regimen, that means taking only the maintenance medications and the absence of all UC Pancolitis symptoms. My longest remission in my 36-year UC life was 15 years, and the shortest about 6 months. That was due to the then GI group not treating the flare up as required. When I received the proper meds, I was in remission for 3 years.

Again, what is "normal" for you?

Thank you in advance for your responses.

I had a good solid 3 year remission. I have now been flaring since November 2010.

Red_34 said...
Kiwi, you may not get a good comparison on this thread. Almost everyone you see on this forum are having trouble controlling their Uc and the ones that don't have no need to come here (lucky ducks!). :)

Hi Sherry (hope I can call you Sherry?),

I do comprehend that most UCers in remission don't visit the board as often as they'd flaring, but there are so many of you veterans I'd hope would educate the rest of us.

In addition, there are a lot of lurkers I'm hoping to get to participate.

Your post was an eye-opener for me, and I thank you for that and wish you a long life in remission.

Have great day.

pink1 said...
I had a good solid 3 year remission. I have now been flaring since November 2010.

Thank you for responding.

Sorry to hear about the flare. Hopefully the meds bite soon and you'll get another 3 to 10 years of remission out of that.

When I was enjoying my 3-year remission last time, I almost thought that I'll never experience a flare-up ever again. You can only imagine my anger after my 15-year remission turned into a flare up.

There is always hope.

Good luck to you.

That's true what everyone is saying about every UC patient is different.  All I can respond is that I don't like to talk about remission because I don't want to jinx myself.  Does that sound crazy?  (Sorry).

Red_34 said...
Kiwi, you may not get a good comparison on this thread. Almost everyone you see on this forum are having trouble controlling their Uc and the ones that don't have no need to come here (lucky ducks!). :)

I keep trying to remind myself of this... One of my biggest questions is how "normal" I can expect to get... am I having too high expectations thinking I can have a normal pre-UC type life? I just keep reading people flaring, being hospitalized, etc and it looks so hopeless sometimes.

Hoshi~ said...
I keep trying to remind myself of this... One of my biggest questions is how "normal" I can expect to get... am I having too high expectations thinking I can have a normal pre-UC type life? I just keep reading people flaring, being hospitalized, etc and it looks so hopeless sometimes.

Hoshi,

Like everybody is trying to enlighten me, we all are different. There are benefits one can glean from reading forums like this, but you must understand that most of the 'lucky ducks' are not here telling their stories - no need. So, you most likely will get a 'weird' picture.

There are some true gems you can obtain by following the threads, you just need to separate the real from the fake gold.

My wife reminded me a couple of weeks ago that I used to lurk on a forum like this (maybe it was Healing Well?) some six or seven years ago, and that I gleaned beneficial information. That made me find this forum and then write a few post. I thought that hearing from an old UCer (I do have Pancolitis, the most severe form of UC) that remissions happen and meds can bite, could give some newbies more hope.

My four decades with the UC tell me that I myself am the yardstick for anything UC related regarding me. For me 'normal' still translates into life in remission; i.e. absence of the symptoms of UC Pancolitis.

I think every person chooses their own 'normal.'

Stick with the hope.

ByeByeUC said...
I was literally in a constant flare for 6 years...I think I had remission (if you want to call it that) a handful of times but it never lasted longer than a month. My UC was totally resistant to meds.

ByeByeUC,

I can't even imagine what it must have been for you, and I've experienced some hard times in my UC life.

I'm happy to hear that your operation went well and your life is again enjoyable. I can only hope that if the time comes for me to have a colectomy, it's going to be as successful.

Enjoy your weekend.

ByeByeUC said...
Yes, KiWi44 it was pretty much hell on earth! Hence the reason why I had surgery. Best wishes to you...hopefully you will never have to worry about surgery.

Thank you for your best wishes BBUC.

Thankfully I reached a point years back that I quit worrying. It was a real relief. I know anything can happen tomorrow or today, but I'm not worried anymore, every second of every day. I thank God for that.

All the best.

First flare -- four months
First remission -- one month
Second flare -- three months
Second remission --- Thirteen months

Seems like the more you have your med regime down pat the longer the remission. Although all h--ll can break loose despite doing everything right, I'm sure.

I had two big flares and one mini flare during the first year I was diagnosed. I have been in remission for 9 years come late July.

Thank you all for your responses. This ought to give others some idea how diverse this disease is.

I feel very sorry for those who flare almost continuously, not to mention the few that never have experienced a remission.

The happy part of this thread is that remissions occur and can last for years, 9, 15, 20 ...

That is both reality and hope to all.

Best wishes to all.

I flare every year