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What keeps you in remission and how severe is your UC?

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Ulcerative Colitis
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Posted 5/9/2016 4:02 PM (GMT 0)
I thought this might be helpful for newer posters, or people who are struggling with a flare up.

Please respond with what works for you - whether it's a combo of things or just one thing and how severe your UC is.

I was going to post a poll but I figured it wasn't going to work because there are too many possible combinations... smhair

For me it is:
  • Surgery
  • Severe Pancolitis
Posted 5/9/2016 4:34 PM (GMT 0)
Most people who are in remission aren't posting on boards like this one. Nobody's going to visit this board for the first time if they are in remission. Those who are doing well tend to leave or at least drastically reduce their posting activity.

If newcomers want hope, they should remember that this board probably doesn't represent the average UC experience. Most people with IBD are apparently in remission most of the time and half of all people have a mild case. Wasn't true for me in the slightest. Still isn't true.
Posted 5/9/2016 4:49 PM (GMT 0)
Proctosigmoiditis - severe

To achieve remission, all of the following simultaneously: 4 lialda, rowasa, 75mgs 6mp, 5mgs/kg of remicade, and prednisone.

Sustain remission: only 5mgs/kg of remicade
Posted 5/10/2016 12:21 AM (GMT 0)
While in remission my UC seemed more of a dietary inconvenience than a wretched disease. But when I was flaring the symptoms were as bad or worse as any that I have read here. They included many of the possible extraintestinal manifestations such as severe arthritis and eye inflammation.

Diet had little effect on my flares. I cannot tolerate mesalamines. Fortunately I was able to get into remission thru antibiotics. I have no idea what I would have done if abx weren't effective.

But once in remission I can remain healthy by closely watching my diet for triggering foods and taking probiotics every day. Psyllium seed taken when needed.
Posted 5/10/2016 12:35 AM (GMT 0)
Severe pancolitis

Still searching for long term remission but right now Remicade and Imuran seem to be working.
Posted 5/10/2016 1:36 AM (GMT 0)
Thanks for sharing.

Kulinary, I am happy you're having luck with Remicade!!

IamCurious, your response is perfectly in-line with what I was thinking. We need to think out of the box. Antibiotics often aren't considered and they can be very helpful for some.

It's good to see that not everyone is doing one thing or another, there are a variety of options.
Posted 5/10/2016 2:19 AM (GMT 0)

NiceCupOfTea said...
Most people who are in remission aren't posting on boards like this one. Nobody's going to visit this board for the first time if they are in remission. Those who are doing well tend to leave or at least drastically reduce their posting activity.

There is some truth to this smilewinkgrin
Posted 5/10/2016 5:53 AM (GMT 0)
I have severe pancolits

I use remicade and imuran
In order to make me a functioning human being I needed extra remi dosages as well as lots of IV steroids.
Now I am doing pretty well although I suspect I am flaring (bleeding)

My approach is to be as aggressive as possible with therapies because they tend to work better the earlier they are used.
Posted 5/10/2016 11:35 AM (GMT 0)
I have mild to moderate colitis and am in remission. I post here because I now have secondary arthritis even though I am in remission (rheum says this happens sometimes).

Am a fairly easy case when it comes to UC. Pred gets me into remission. Balsalazide and azathioprine keep me in remission. I ought to revisit whether I need the aza actually. I was put on it because even in remission I seem to have poorly formed stools and GI wasn't sure what to make of that. I had poorly formed stools on aza as well until I started doing SCD.

Aside from medication, when the arthritis kicked in I added SCD, coconut kefir and curcumin. That seems to keep my stools mostly formed and my arthritis at bay.
Posted 5/10/2016 12:04 PM (GMT 0)
Great topic idea! Although I have to say that I'm in remission and still like to pop in sometimes, mainly to hear what new stuff could be out there and hear how people are doing. Even though I am not having symptoms unfortunately I know this could raise its ugly head at any time so I feel like I can't get all cocky and pretend it's not part of me. But for now, it's not. :)

Severe Pancolitis
Remission - currently maintained with Isatis Cooling (Chinese herb, research here or read reviews on Amazon), Turmeric, and Grapeseed Extract. Also monitoring diet.
Posted 5/10/2016 2:40 PM (GMT 0)

NiceCupOfTea said...
Most people who are in remission aren't posting on boards like this one. Nobody's going to visit this board for the first time if they are in remission. Those who are doing well tend to leave or at least drastically reduce their posting activity.

If newcomers want hope, they should remember that this board probably doesn't represent the average UC experience. Most people with IBD are apparently in remission most of the time and half of all people have a mild case. Wasn't true for me in the slightest. Still isn't true.


Well, I'm in remission and I'm still here.................with that said..............


6MP and Uceris put me into remission. Been in remission for over a year now.
Posted 5/10/2016 2:52 PM (GMT 0)

Michelejc said...

NiceCupOfTea said...
Most people who are in remission aren't posting on boards like this one. Nobody's going to visit this board for the first time if they are in remission. Those who are doing well tend to leave or at least drastically reduce their posting activity.

If newcomers want hope, they should remember that this board probably doesn't represent the average UC experience. Most people with IBD are apparently in remission most of the time and half of all people have a mild case. Wasn't true for me in the slightest. Still isn't true.


Well, I'm in remission and I'm still here.................with that said..............


6MP and Uceris put me into remission. Been in remission for over a year now.




yes, but being as you are a highly compensated moderator, you do have a job to perform, and that requires you to be here -

wink

and you do it quite well btw :-)
Posted 5/10/2016 3:17 PM (GMT 0)
Compensated, now that's a good one as we're volunteers lol. All we usually get is flack/complaints when people disagree with our actions, seldom a thanks. But I suppose spam you don't see isn't often thought about. NSSG deleted a few whole pages of spam a few days back :-)
Posted 5/10/2016 3:56 PM (GMT 0)
I'm in remission and hang around but true, I don't post much. And my "how you stay in remission" story is not really helpful as I don't think it would work for most people, hence I rarely discuss it. (It doesn't involve meds and I am not one who enjoys acrimonious debate).
Posted 5/10/2016 4:38 PM (GMT 0)

Serenity Now said...
I'm in remission and hang around but true, I don't post much. And my "how you stay in remission" story is not really helpful as I don't think it would work for most people, hence I rarely discuss it. (It doesn't involve meds and I am not one who enjoys acrimonious debate).


oh, come on SN, don't be a party ....... you know ..... smilewinkgrin

besides, we need a good whatever that word is debate - kinda quiet round here of late devil
Posted 5/10/2016 5:12 PM (GMT 0)
LOL Stud! Are you missing your buddy from Louisville?
Posted 5/10/2016 8:15 PM (GMT 0)

Serenity Now said...
my "how you stay in remission" story is not really helpful as I don't think it would work for most people, hence I rarely discuss it. (It doesn't involve meds and I am not one who enjoys acrimonious debate).


But that is why we need to hear from you, so we can share the different options that might be helpful. As NSSG said in my case:
“Antibiotics often aren't considered and they can be very helpful for some. We need to think out of the box.”

Sharing what keeps you in remission might be very helpful for others here. That is the whole purpose of the forum.
Posted 5/10/2016 8:38 PM (GMT 0)

Michelejc said...
Well, I'm in remission and I'm still here.................with that said..............


6MP and Uceris put me into remission. Been in remission for over a year now.

I know there's a few exceptions to the rule, but I reckon it's true of most people. Look at Somedude for example - where is he, now that he's in remission? Gone riding off into the sunset, that's what ;_;

Also, I only started coming to this board when I was doing really badly. If my disease had stayed as mild as it was when I was first diagnosed, I would never have joined a Crohn's forum. I wouldn't have one post on HW, let alone over 7000 :-/
Posted 5/10/2016 11:44 PM (GMT 0)
moderate proctosigmoiditis-under remission now.

Lialda 3.6g and Canasa (2 times a week)
Posted 5/11/2016 12:01 AM (GMT 0)
mild to moderate proctosigmoiditis (however colonoscopy showed microscopic in all colon so unsure how that would be classified)

Stay on edge of remission with- 2 Lialda (body can tolerate only 2), Rowasa nightly, 1-2 Anucort/week and very occasional Cortifoam spritz. (sounds like a drink...I'll have a Cortifoam spritz on the rocks)

In addition VSL3, Metamucil caps, slippery elm.
B
Posted 5/11/2016 12:32 AM (GMT 0)
Oh yes, the high pay we receive is what keeps me afloat rolleyes

haha. kidding of course. tongue

Serenity, I don't think anything will break us out into an argument because this isn't about one thing specifically, it's more about "what works for you". I think a lot of people get worked up when they see people promising results with diet, or drugs, or cactus juice, or whatever it is someone is touting this week... we all know nothing guarantees results. Nothing worked for me anyway. sad

It's good to see what people are doing and to keep an open mind. I know when I was first diagnosed with proctitis, I came here and I was pretty clueless. I was able to get into a few good remissions over the years, got a lot of good ideas and advice from people. That was before I knew things would spiral out of control. My GI told me only 10% of people progress. Of course, I figured with those odds, statistics were on my side.

and yes, cortifoam spritz, I needed those frequently, and the drink version right about now smilewinkgrin
Posted 5/11/2016 12:33 AM (GMT 0)
Severe pancolitis.
Surgery.
Posted 5/11/2016 1:13 AM (GMT 0)
I was originally diagnosed in 2009 with mild to moderate left sided uc. Four years later it was mild to moderate proctitis with just a few cm of inflammation seen. After last scope nothing is visible or seen on biopsies.

Lialda and Canasa are what I currently take.
Posted 5/11/2016 1:58 AM (GMT 0)
Originally diagnosed with proctosigmoiditis.

Only have used 5ASA (mesalamine) oral continually and increased rectal to treat flares and decreased rectal to maintenance.

I take probiotics at bedtime and fibre supplements with meals, vitamin D & C, calcium/mag, zinc, multivitamin, low dose Omega, Total Eye care, ferrous gluconate, Grapes+ and Cranberry capsule at this point. L-Lysine for colds, sinus infection and apthous ulcers on my gums.

No special diet
q
Posted 5/11/2016 2:06 PM (GMT 0)
Well it is pretty basic.

How I got out of my two flares:
Lots and lots of rest, reduction of stress (quit my job during my first flare and never went back. Not something most people can do)
No strenuous exercise, only Pilates and light weights
Low fibre diet
Completely abstained from alcohol
(Second flare only): Consumed a lot of food high in resistant starch

How I stay in remission:
Rest whenever tired
Consume potato starch daily
Most of all: consume alcohol very minimally and infrequently
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