Once on meds and in remmission....

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bbc
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Date Joined Mar 2008
Total Posts : 1580
   Posted 5/30/2008 11:03 PM (GMT -7)   
Once on meds AND in remmission how many times per year is it still considered "normal" to have little mini flairs...once, twice, never???

Red_34
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Date Joined Apr 2004
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   Posted 5/31/2008 4:45 AM (GMT -7)   
I think that depends on your definition of a flare and the circumstances surrounding it. For instance, if you are female (?) you can have mini monthly hormonal flares. Or to you a remission is when you still have to run to the bathroom 3-4 times a day but others may call that a flare but that is the new "normal" for you. For me, I would say that a remission entails no flares whatsoever. Of course I can't speak from experience because even in remission, I still have some sort of symptom but they are never severe, more like a tiny blip. It's when those blips turn nasty and into something more serious then I know I'm in a flare. So to me, minor blips while in a remission still means I am in remission as long as they go away or only happen once or twice a week with none of the other debilitating symptoms such as massive bleeding, D and pain.
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jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 5/31/2008 5:30 AM (GMT -7)   
I agree, it's a matter of what you consider a flare. Some consider any day when they have to go more than usual, or any pain in their abdomen a flare. In my case, I don't even think flare unless it lasts for a week or there's mucus or blood.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
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Please remember to consult your health care provider when making health-related decisions.


bbc
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Date Joined Mar 2008
Total Posts : 1580
   Posted 5/31/2008 8:49 AM (GMT -7)   
I guess I would consider a full flair to be D, Blood, and maybe a low grade temp with all the associated strong stomach pains. A mini flair would be moderate stomach pain with no D, just soft stool and a bit of blood on some of the stool or toilet paper...
 
I would really like to know what the medical prof's say about having these mini type flairs during the course of a year and if it's still considered part of being in remmission or not...anyone ever discusseed this with their MD?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30091
   Posted 5/31/2008 12:43 PM (GMT -7)   
Hi...mini flares I still consider a flare and I treat them all the same..back to square one nightly rectal meds. 
 
There are varying degrees of inflammation...each will give you different symptoms. If you've set it up in your mind to deal with the most obvious, then you'll have waited too long in dealing early.  But, some events in our lives prevent some symptoms from being obvious.  It seems high adrenaline/cortisol in our bodies can mask the symptoms...haven't many of us had it hit after the storm when all is quiet?

Remember the pattern of UC....it spreads upward from the rectum, it won't inflame all the colon or fullest extent of YOUR UC area all at the same time unless it's always at a slow simmering inflammation state.  .

Low in the rectum will cause constipation. If your UC is limited there, eventually you'll see bleeding if it's gotten to that point. This is the area we tend to not recognise early.

If it's extended to higher in the rectum, you'll have more symptoms, maybe some constipation, maybe more urgencies, maybe more bms..but maybe still formed. It can progress to looser stools, but you'll have more as the inflammation increases.

If it's extended past the rectum..you'll KNOW because of the diarrhea, and since the rectum will also be inflamed, the urgency will be part of it for sure as well as increased bms...all will probably include those wonderful white-knucklers..

Eventually, the bleeding can happen if the inflammation gets to the point of mucosal membrane fragility.

So, the earliest you deal, consider any consistency in symptoms a flare. Be them pending, early or whatever...if flare isn't the best word, then consider it mild inflammation.

Rectal meds can be your best bet in dealing....that's why I have learned it's best to find a maintenance dosage which has been tapered.

It's all a learning process....learn now or learn later. I did both.

And if a doctor tells you to not worry unless you're bleeding???????? That's total bs. It's YOUR butt....you're the only one who will recognise symptoms at the earliest.

And....in saying all that, most of us have IBS. So, those symptoms will tend to come and go. It's a wait and see, and eventually the clincher symptom will confirm it.

Women with periods with UC or not will have the normal hormonal diarrhea, cramping..etc. That should only last for a few days. If it's continual, then it's probably triggered a flare. My suggestion would be to use an enema a few days before and one once the flow has started....that could help prevent the "trigger" the autoimmune response.

There are many tricks and options available...the whole goal is to help prevent one from getting worse...hence the term maintenance.

My $$ based on experience. Not that all will follow my pattern, but it's one that could help others to find their own.
It all takes effort...wishing it not to be isn't a reality (I've found).

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 5/31/2008 1:47:53 PM (GMT-6)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/31/2008 3:30 PM (GMT -7)   
Thanks Q for the great post. I am just confused because I recently switched from 8 asacol daily and rowasas every third night to lialda 4 per day and now rowasa every night but I am getting some minor blood and only on the last couple of pieces of stoll in the BM (the first few are completely clean).

quincy
Elite Member


Date Joined May 2003
Total Posts : 30091
   Posted 5/31/2008 8:38 PM (GMT -7)   
Curious when your last c-scope was.

I think that when stool passes over the lining, and it's fragile, it opens it and the last amount of stool brings it with it.

Is it with all bms or just a few? How many bms do you have in a day?

Maybe you're on too much Lialda? 4800mg compared to 3200mg asacol. Cutting back one (with your doc's permission) might be helpful.

Why did you switch?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/1/2008 9:14 AM (GMT -7)   
My last colonospoy was late May 2007 and I had a sig about 3 mos ago.

I switched from Asacol to Lialda simply to take less pills.

I only have 1 BM per day but on the nights I use Rowasa I try to have a second but not always. I was always curious if the recommended BM before using rowasa was to help one from pooping it right out or to help the medicene reach further into the colon or maybe both...can never get a definative answer for this either just different opinions from different docs.

I know the higher doseage of Lialda comp'd to the asacol is concerning but my doc warned me that I may need the max dose with it compd to a smaller dose with asacol since lialda is timed released etc...perhaps lialda's special mmx coating that helps it release over time vs asacol may not be best for me or since I'm super stressed out due to our upcoming move that could be why I am having a mini flair???

I truly feel my bleeding is from higher up as the blood is mixed in the last piece or two of stool vs just on the surface but I'm just guessing and trying to use info others have suggested here. Just wish someone here had the same issue and got a concrete answer from their GI doc as mine says it could be either rectal or higher up...he also said that if I'm not better soon I am to go back on the asacol.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30091
   Posted 6/1/2008 3:49 PM (GMT -7)   
I've not had a bm before using the Salofalk enema (same as Rowasa) before using unless I've had the urge. I'd never force one. Curious...do you notice the blood every day or the days you've forced a bm?


Remember that some 5ASA meds can cause bleeding/exacerbate some symptoms...there is a fine line between not enough and too much. Some doctors work from low to increase, others from high to decrease. I think that increasing is better..I'm biased.

The fact that you percieve to be bleeding from only one spot seems strange, unless it's in the sigmoid where stool would normally sit...and the Rowasa or the Lialda isn't getting enough med....kind of the ~~~>.<~ spot.

The other thing is that you might have a polyp in that area? What was the report of your s-scope?

The blood, if in/along the stool would have a long enough time to sit in there. I have noticed the same when I was bleeding with a flare and when healing, but I know that the inflammation/flare was only in the rectum...so, it still could be that for you.

Is your UC throughout?

I think you should still taper the Lialda firstly before saying it doesn't work for you....go down one pill while you're on the nightly Rowasa.

Do that firstly, then after another week, reassess.

Best to experiment.

As well...take into consideration that you have major stress regarding moving..it's way up there with divorce and death I believe.

If you micro manage, your focus is only on one thing.....make a decision with meds (you are still on too high a dosage of Lialda from my perspective....and because it's time released, you should be able to be on less, not needing more).

OK...'nuff preaching....
Hang tough..reconcile this will be a bumpy ride...then you won't be disappointed.

Been there....it is what it is.

keep me posted.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/1/2008 5:03 PM (GMT -7)   
Thanks Q.

I have pancolits and there were no polyps. The GI doc said my colitis was mild-moderate by his visual assesment but the lab work/biopsies said it was moderate to moderate-severe in some areas but when they did the scope and biopsies I was in right in the midst of a very bad flair so the testing was done when the colitis was at its worst.

The lower dosage of Lialda was not working (went form 2 to 3 to 4) and that's why we up'd it to 4 per day.

The blood was not when I was forcing...I have an old fissure so I try not to do that.

Thank the Lord (lots of prayer truly helps) I am feeling better today.
 
I did have a BM before using the rowasa last evening so I think that helped get the medicine further in also.

The only reason I perceive the bleeding to be in one spot is the first 90% of a BM is blood free just the last 10% get blood on it.

For the last 5 months I was in complete remmission and this blip/mini flair could have been due to the Asacol to Lialda switch or the heavy stress from getting ready to move, selling and buying a new home, taking care of my 88 year old Dad who is loosing his vison and memory and me also dealing with two pinched nerves in my neck for the last month (I have about 6 herniated/buldging/degenerative discs in my spine) plus work stress etc etc etc

This IBD suff is a real pain in the ass lol but I know it could be so much worse and I am blessed to be living in the US with it vs in a cardboard shack in some third world country.

Q- I truly appreciate your taking an interest in my case and thank you : ).

Post Edited (bbc) : 6/1/2008 6:09:33 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30091
   Posted 6/1/2008 10:31 PM (GMT -7)   
Hi...You're most welcome.

Regarding living in a third world country...I'd have been dead long ago. No kidding.

More of your situation comes out with each posting making it much more clear. You have your life full of the highest stressors on the % scale.

Constant back pain, degeneration and pinched nerves have been a constant in my life since I was young...I can relate to a point (subjective)...I do use Robaxin as a muscle relaxant (should buy into the company). I don't have a bulging disc, but anything over and above my pain threshold or not being able to function after a wrong move will send me over the edge. not being able to wipe myself when that happens is rather humbling.
I do see a chiropractor, and it helps me a lot. I've not done accupuncture or had surgery. Yes, I fear for my future regarding that.
I feel for you.

Work stress...I do work on my own at this time and it can be stressful. I see my husband's stress when changes happen for the worst...OMG, seems recognition comes if one fits the AH criteria. (oops, off-track)

You asked about anxiety meds in your other post....Xanax or ativan or clonazepam can help take some of the edge off. You still want to function, however. You might consider to enquire to talk with a support group for care-givers or aging parents..etc.

You've definitely come a long way in healing, and maybe once things have settled after your move, you'll see more improvement.

I can suggest many things, but haven't quite been in your situation, but have in similar, and when I'm feeling deep distress where I've lost control and don't have immediate solutions, I start to shut-down until I start to produce some options for myself.

I just want you to know that I have been on rectal meds nightly for as long as 4 months....so please just let them at least help keep things at the most calmest state as possible before you worry too much...they'll help during this crucial time in your life.

If you got worse....I'd say it's not working, but if things aren't and you're maintaining the status quo...keep it as a constant and try to not focus on it as much.

It took me a long time to get my flares figured out..and I didn't have my whole colon to deal with as you do.


quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 6/2/2008 8:31 AM (GMT -7)   
bbc said...
Thanks Q.


Q- I truly appreciate your taking an interest in my case and thank you : ).
  Quincy is great and always takes the time to help everybody!
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 

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