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Crohn's Disease Forum » General IBD Discussion » How do you describe a flare?


02-07-2008, 10:58 AM   #1
Keara07
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How do you describe a flare?

Hi-

I have a question and was wondering if anyone can help me out.

New to the diagnosis, I am trying to figure out what is considered a flare? I have been calling my pain episodes (whether 5 mins or 2 days) flares and not including the other symptoms going on but from all the postings and reading I think the term refers to all the things that go on , including the pain - like fatigue, extra bowel issues etc.

I am on predisone and pentasa (have been on entecort, suffolak, asacol too all in the last month), and my doc says I am on these for at least 4 months - does this mean I am in a flare for 4 months?

Oh - one more question, has anyone experienced a black mouth? I asked the pharmacist if it could be a reaction to the drugs and they said it could be some fungal thing related to them or maybe the disease but I can't find any info and my next doc appt is in two weeks. Basically my tongue looks like I drink a lot of grapejuice and then it also builds on my cheeks but can be scraped off with brushing every 2-3 days. I am brushing and rinsing loads...and with a mostly liquid diet, low cal due to reactions, I don't think it's what I am eating.

Thanks for any help -

totally confused Keara
02-07-2008, 11:50 AM   #2
butt-eze
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You will know when you're in remission. You will feel nearly normal and symptom free. If you are still having frequent BMs, even 3 or more a day you're probably still symptomatic.

I get a black tongue when I take pepto bismol. Have you been taking a lot of anti-diarrhea products?

Taking medications for four months does not mean you're having a flare for four months. This means that you will be on medication for that long. Your symptoms can calm down well before that. For some people it can take a long time to get into remission. It is all different for every person.
02-07-2008, 12:48 PM   #3
Keara07
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I look forward to that :>)

No anti-D drugs here - I do have days of the D or urgency, but some days it's opposite. I am all over the board there.

I think the pred is starting to finally kick in tho and that's happy for me....can you be considered in remission and on high steroids still? I know I may be on drugs for the rest of my life, hopefully something with less side effects. I think the plan is to start a taper in 2 weeks. I have read in these threads somewhere that pred can mask symptoms too which is good (feel better) but worried for things to come back with a taper.

I hope the pain stays at bay though - that's the main thing for me. It was what drove me to the ER finally - I had just accepted all the other symptoms throughout the year(s), and accepted the ulcer explanation and acid reduction treatment.

Really appreciate the info butt-eze. I guess it seems like a simple questions compared to others out there, but as a newbie, it can be frustrating.
02-07-2008, 01:45 PM   #4
Kev
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Flares can be tricky.. don't think there's a hard N fast definition everyone here can agree on... it's pretty subjective. I ascribe to the theory that a sudden downturn in ones health DUE to IBD can be called a flare. If you are holding your own, even improving WHILE on meds, or a regimen (strict diet, supplements, natural or other remedies) then you are not in a flare. If you are holding your own or improving off meds, then you are in remission. Any change for the negative, lasting hours, days, etc., in succession, I deem to be a flare. A longer duration of decreasing health I don't classify as a flare, simply because I see a flare as a temporary thing that one can crawl back up out of by adding a new med, increasing or changing a med, being more prudent in diet, exercise, that sort of thing... But, that's just my humble, rule of thumb opinion on it, OK?
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02-07-2008, 01:59 PM   #5
butt-eze
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Hmmm...You can be in remission and on high steroids. That is usually what induces remission. It is true that symptoms can return when you are tapering off the steroids. That is why it is important to do exactly what the doctor orders and call immediately if you have any side effects.

If your physician is using steroids to induce remission I would think that you are intolerant or unresponsive to the other meds you have already tried. Is your doctor considering Remicade or Humira already? It doesn't seem you've tried the medications for long enough periods. Have you tried azathioprine already?

Amy
02-07-2008, 02:24 PM   #6
Kev
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I disagree BE.. You can be symptom free on steroids, but I don't think of it as being in remission until you come off the steroids and stay symptom free. I take that stance simply because one can't stay on steroids (mores the pity). Like I said at the start, there's no hard N fast universally accepted definition, but I feel that you HAVE to discount periods of being symptom free as a remission IF YOU KNOW that you have to come off the drugs that causes it.
02-07-2008, 02:27 PM   #7
Keara07
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Yes, they switched me it seemed every week. I was only in the ER on the 29th Dec for the first time not including times in the past where I think now (hindsight 50-50) it was this afterall.

First on asacol, then added pred when I landed back there on the 2nd, then when I saw the GI he switched me to entecort (he was hoping not to put me on the pred long term for the effects and he had only an x ray and the CT to go for info) and pentasa. I had been on suffolak for only three days after the asacol went right through me for 7 days and my throat closed up - too hard to swallow them with the coating. But that all changed when I saw the GI the second time-I landed in his office a week later with long & severe reaction to the upper GI/ small bowel series test he switched me to pred again (I had only the 10 days @ 50mg treatment in early january) due to at least one internal fistula and more inflammation then he thought. The CT had not showed all or he thought, it had gotten worse. A lot in a month!

He said he wanted to get me a lot better asap as I was going downhill super fast. He is very unsure if I am responding to any meds other than the pred for pain although, it does seem like a short trial listening to every one else's stories. He did tell me I was a *severe* case although at the ER the first time they said mild and easily fixed.

I may need a colonoscopy as well but he's not touching me until he can touch my belly without me cursing. lol

Good news in the last three days is from about noon to 4/5 pm I feel like me a bit more. Yea! The mornings are a waste as I react to the pred intake and more or less go dizzy, become extreme weak and have to lay down for three hours (or sit with kids handy :>))....and the evenings keep me low key too. But a few hours is better than none for too sure!

The only other drug spoken of is the Imuran so far - but who knows what is coming. I only take partial prescriptions now for sure as I have loads of unused drugs. I get them filled doc appt to doc apt.

Glad to hear more about the remission/flare concept. Thanks.
02-08-2008, 11:31 AM   #8
Wiles
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Sometimes I find it hard to decide if I'm having a flare or not. I always have to make frequent trips to the bathroom, flare or not. I always have pain, but it's worse during a flare. The best gauge for me is my weight. When I'm having a bad flare up I lose weight.
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