Questions about flaring...

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ldarcy
Regular Member


Date Joined Oct 2008
Total Posts : 32
   Posted 10/30/2008 10:15 AM (GMT -6)   
I've been lurking here awhile but haven't posted before...  I was diagnosed with Colitis in September 2008 - and was put on on Asocol (6/day) and I'm going back in November for a followup.  
 
My GI told me I had active colitis - does that mean I'm flaring?   I was feeling fine and hadn't had any major symptoms other than a bad week back in August.  Do you always know if you are flaring or can a flare be so mild you don't even realize?  Can a flare be mild one day and bad the next?  If it gets bad again, do I call the doctor and let him know the Asocol isn't working? 
 
I'm glad I found this board - it's been really helpful and informative!  Thanks in advance for any information!

ldarcy


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/30/2008 10:40 AM (GMT -6)   
Most of us judge flares by our symptoms, and yes, the severity of the symptoms can vary from day to day. Active ulcerative colitis means that there is inflammation in your colon, even though you may not have symptoms. Hopefully with the Asacol your inflammation will remain low and your symptoms not troublesome. Sometimes people think this means the disease is gone, and stop taking their medications. They often pay with severe flaring which may take weeks or months to control. So keep taking the med - the fact that you don't seem to need it often means only that it's working well for you.

If your symptoms worsen, do contact your doctor. He may want to increase your Asacol dose, add rectal medications or even a short course of steroids to help bring you back into remission. An increasing flare left untreated rarely gets better on its own.

Welcome to HealingWell. We're sorry you need a forum such as this, but so glad you found us since you do need it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 10/31/2008 1:47 AM (GMT -6)   
hi...welcome to the forum!

As usual, I'll suggest you ask your doctor for rectal meds in conjunction with the Asacol rather than upping them.

Where in the colon is your UC..limited or throughout?

Eventually experience will be your teacher. Some UCers can have symptoms that don't match the amount of inflammation in their colons...so you'll learn what your flares are like.

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 10/31/2008 5:42 AM (GMT -6)   
Welcome to HW - you have found the place where you can learn and also have people truly understand how you are feeling both emotionally and physically. I am still new to this disease - started flaring last May and officially diagnosises 8/25/08. When my flare was at it's worse I thought death would be better, but each day does get better. I am heading towards remission, but not quiet there yet. Some days are good and some days are not so good. It all varies w/ each individual.

I hope this helps you.

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


ldarcy
Regular Member


Date Joined Oct 2008
Total Posts : 32
   Posted 10/31/2008 10:47 PM (GMT -6)   

Thanks for your replies - it is so good to have somewhere to go to ask questions and find reliable information - my doctor didn't seem too eager to sit around discussing what I should be doing next - I had so many questions but wasn't even sure what I should be asking! 

Quincy = in answer to your question, I believe the UC is throughout the colon, although I don't think I was actually told this - then again, it's possible that I just don't remember - for much of the diagnosis appointment I was in a bit of a daze!  shakehead

I am finding that it's very much a learn as you go kind of condition - I'm an obsessive planner and find it difficult to deal with the unknown aspects of the disease!

I'm currently looking into probiotics and fish oil and any other supplements that may help.  I'm hoping to be proactive about this and do whatever I can to get things under control!

Thanks for your encouragement!


Ldarcy
45, female
Diagnosed September 2008
Asocol (2 - 3 times / day)
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 11/1/2008 12:11 PM (GMT -6)   
When is your next appointment exactly with the doctor? you "should" make a list of questions to have your appointment go efficiently.

Remember that you should be on rectal meds...since you're on Asacol, I would suggest for you to start with the Rowasa rather than the suppositories....getting the rectum controlled is really the goal, considering that's where UC starts and heals lastly.

Eventually, you'll get the hang of the meds, etc. You won't be able to plan every move, so to say, but with a good med regimen, oral and rectal, you'll be able to control most or all of your flares at the earliest by increasing the rectal when needed and tapering to maintenance.

Probiotics, I think for everyone, are a must.

Fibre supplements (subjective) help to bulk the stool, soften it, encourage the colon to work!. Make sure you don't consume artificial sweeteners...
Make sure you EAT!

Get your vitamin D checked....most IBDers are deficient in it according to my doc, not only the ones he assumed would be.

Do the reading and research, that helps immensely (for me anyway).

As well, make sure you get a copy of the pathology report and any blood tests that were done.

hope you feel better soon.

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 

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