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What does 'Remission' look like for ibd?

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Ulcerative Colitis
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Posted 6/25/2010 6:06 AM (GMT 0)
At what point do you consider yourself to be in remission. Im reading people's siggies and some say they've been/are in remission. How long do you have to go without symptoms? I always have something 'interesting' going on where IBD is concerned. Like right now, Im not suffering the usual bloody loose stools but I will have some cramping after eating, but only sometimes and its very mild. I still feel exhausted and I kind of feel gurgly and like I could need to run to the toilet, like there is something going on but not a full blown flare. I just got over a nasty flare and feel much better then I did, but my digestion is never normal and has never been since my symptoms first presented years ago.

What does it mean to be in remission? Does it just mean you arent flaring at the mo or something more substantial?
Posted 6/25/2010 6:20 AM (GMT 0)
Remission is "a temporary or permanent decrease or subsidence of manifestations of a disease."

For me, remission is perfect poo, no bleeding, no mucous, no urgency... The condition of my poo is a very good indication. Sometimes, when I'm coming out of a flare, I will still have urgency, because it takes awhile for my colon to heal. But I know I've reached remission, because I'm having perfect poo. The urgency will gradually go away over the next few weeks, and I will gradually be able to eat anything except for foods high in fructose.
Posted 6/25/2010 9:37 AM (GMT 0)
I see. So does the length of remission for you (or anybody) vary from flare to flare? I would say that I go from remission to flares several times a year, then, by your definition. And even then Ill still have some symptoms that *I* have associated with my illness. For example, when Im not flaring (ie diarreah with bleeding) I still feel full when I eat a small amount of food. I still have to watch what I eat, bc while it wont cause a flare, Im still in a considerable amount of pain just from eating, its as if Im always on the brink of a flare sometimes, if I just slip up with one small thing (caffiene is a trigger for me). This is what confused me about my initial diagnosis (if you remember one of my first threads, why the meds didnt seem to help with all this), that while I wasnt bleeding I was still in pain and feeling lethargic....

hmmm. All this to take to the gastro for my next appointment.
Posted 6/25/2010 11:08 AM (GMT 0)
I've only had one remission in the time I've had UC (10 years) and it's now. I define it as near-normalcy because after this long I don't know when the day will come when I don't think about my gut and colon and how it's doing even when things are fine.

It feels "substantial" to me, meaning I know how I got into remission, through diet modification.
My bodily functions have returned to the realm of normalcy not like a flare where they are not in my control.
It took 4 months of slow progress before I knew remission was in charge not UC, and I am grateful ever day.
Posted 6/25/2010 1:20 PM (GMT 0)
     Would you consider being in remission while still on prednisone...or is that a fake remission?  Right now I am down to 15 mgm of prednisone and for the first time in MONTHS...have "normal" bowel movements...no bleeding, no urgency.  Great...just when my surgery is scheduled for Monday sad .  However...when I tapered down the prednisone from starting at 40 mgm in Jan...got down to 7.5 the week before Memorial Day...BOOM...bleeding, urgency...loose stools, so had to increase the prednisone to 40 again.  This has been going on since last May with a short reprieve when I had my first two Remicade infusions (of course I was on prednisone then too).
Posted 6/25/2010 2:17 PM (GMT 0)
I may be one of the 'lucky' ones to have an early warning system for flares. Nobody knows why, I am not on any meds that can affect fasting blood sugar. Before the arthritis in my joints, eye inflammation, red rashes on my arms and legs, drenching night sweats, rapid heart beat, and loose stools morphing into constant bloody diarrhea, before all these characteristics of a flare, my fasting blood sugar spikes up.

I measure it first thing every morning. As far as I know I am unique that way. Normally it is 82 to 92. When in a flare it spikes to the prediabetic stage, 110 to 120. Canasa and colasol sent it above 140, but I already knew I was allergic to mesalamines. So when my fasting blood sugar goes above 95 I know I am on the wrong track. Watch what I eat and increase probiotics and herbs.

Also watch CRP level during regular blood work which shows general inflammation.
Posted 6/25/2010 2:25 PM (GMT 0)
Christine, I wouldn't call it remission until it was maintained without the Pred. That's just me.
For me, remission is also perfect poo, pooing once a day.
Remission for me was about fourish years. Then I took birthcontrol and screwed myself up, almost fixed it, and my insides have been sensitive ever since, then I stressed out a lot about coming to Germany and now I'm flaring.
HOME SOON HOME SOON
Sorry, excited =p
Posted 6/25/2010 5:05 PM (GMT 0)
If I made it a month without blood I would consider myself in remission.
Posted 6/26/2010 1:54 AM (GMT 0)
I consider myself in remission since my doc found me clean on a flex sig and I have no symptoms and he says I'm in remission.

I still have to hoof it to the toilet sometimes, but there's no blood and poop is firm

I'm on a very long taper from pred. My symptoms stopped at around 20 mg and I'm now on 3 mg. a day. So I don't think you need to be completely off pred to be in remission.
Posted 6/26/2010 4:54 AM (GMT 0)

BabeintheWoods said...
I may be one of the 'lucky' ones to have an early warning system for flares.

Same here. My poo gets less firm.
Posted 6/26/2010 4:57 AM (GMT 0)
I should have mentioned that I don't take meds when I'm in remission. So I am symptom free and med free when I'm in remission.

However, remission can mean different things to different people. After all, the textbook definition states that it is "a temporary or permanent decrease or subsidence of manifestations of a disease." The definition doesn't state that it is no manifestations of a disease.
Posted 6/26/2010 5:26 AM (GMT 0)
I don't think you can consider yourself in remission if you're on prednisone. I was down to 2.5mg when I flared up last time. I couldn't get off so I guess I was never really in remission. I am again in "remission" but I am on prednisone. I am sure if I stopped the prednisone I would start flaring. Hopefully with a slow taper I will be able to remain in remission and get off prednisone.

I don't think you're quite in a flare by hearing your symptoms but they are definitely a bit worrisome. I know if I started noticing those things happening, I would think a flare was eminent. I always expect the worst.

Posted 6/26/2010 4:33 PM (GMT 0)
I am in remission when I can pass gas without any liquid or anything else.  On a more serious note I am in remission when I go for a #2 once or maybe twice a day.  Also no urgency and of course no blood or mucus.  Also no cramping.  For my doctor it's a clean scopy with no signs of inflammation.  That's about as clear as I can get.

MyUC

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