uc progression...

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kare15bear
Regular Member


Date Joined Jul 2006
Total Posts : 31
   Posted 11/15/2007 12:34 PM (GMT -7)   
Hello everyone. It's been about a year since I last posted a comment (though I haven't posted, I have been reading other's posts). Anyway, I'm nearly 24 now (was diagnosed right before my 21st bday). I was first diagnosed with having mild left-sided colitis.  Since then, I've had had 3 colonoscopies, my most recent being about 5 weeks ago in which I learned the bad news that my uc has progressed to severe pancolitis.  have any of you experienced such rapid progression with your uc? My GI put me on a pred. taper following my colonoscopy, the taper did have quick results, but now, i'm off of the pred. (still taking 4800mg asacol daily as well as canasa supp.) and I already am noticing more loose bm's, cramping and pain, achy joints, and urgency...i greatly fear another flare approaching. My doc wants to see me in 4 weeks to see how i'm doing off the pred., I fear by then I'll be in a full on flare!  Any suggestions?  Also, back to my original question: how quickly has your uc progressed??
 
thank you for your time,
 
Karen in NM

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 11/16/2007 1:50 AM (GMT -7)   
Hi Karen...welcome back. My UC hasn't progressed at all...as a matter of fact, it's never been as bad as it was during diagnosis and the first year. I'll credit that to using both oral and rectal 5ASA meds.

You might call your doctor to request a 'script for the 5ASA retention enemas instead of using the Canasa. How often are you using the Canasa?

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/16/2007 6:11 AM (GMT -7)   
My Uc progressed in about 3 years from mild/moderate U. Proctitis to moderate/severe left sided. But yes, progression is always possible even while taking meds. It is something that can't be determined if it is going to happen or not. I second, Q's recommendation about the enemas instead of the suppositories. They will have more coverage then the suppositories. But you should call your GI to let him know the change in bowel habits.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 11/16/2007 6:19 AM (GMT -7)   
My UC progressed from moderate left sided to severe pancolitis becuase i stopped taking my meds for awhile (needless tos ay I will never do that again!) If in the next few weeks you feel yourself slipping back into a flare call your GI. He says 4 weeks but don't be afraid to call him earlier than that.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/16/2007 6:23 AM (GMT -7)   
Karen,

Years back after two years of a series of initial severe attacks and rounds of high dose pred incl two hospitalizations with IV pred, my severe pancolitis (not sure what it started as, because it was 6 months of on and off bloody D before it got diagnosed), my UC went into a full 9 year remission without any symptoms. Just wanted to point out that the rapidity of the progression doesn't mean it can't recede as dramatically too, so don't lose hope.

Christopher
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 17.5 15 12.5 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 


kare15bear
Regular Member


Date Joined Jul 2006
Total Posts : 31
   Posted 11/16/2007 9:42 AM (GMT -7)   
Thank you for your responses. I do have mesalamine enemas as well as steroid enemas. the only problem is that I have trouble keeping them in, but i think it's time i work around that minor obstacle. As of now, i am only using the canasa at night as prescribed by my doc which doesn't really seem to be helping much anymore since I've tapered off the oral pred. Another question: my GI stated that after I was off the pred. it is normal to "begin symptoms of a flare," however, he also stated they should not be too severe and should subside rather quickly. Does this sound correct?

Thanks Again!

Karen
  • Diagnosed with Left-Sided Colitis and Proctitis in Aug 2005
  • 400mg of Asacol (4X3daily)
  • Canasa Suppositories (twice daily)
  • Hydrocortisone enemas
  • Rowasa enemas
  • Acidophilus, Vitamins, Lily of the Desert Aloe Vera Juice


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/16/2007 10:21 AM (GMT -7)   
Yes, every time you taper down a dose of pred, you may notice a slight increase of symptoms until your body adjusts to the new dose. It might do this the entire time you taper until possibly a few weeks after you're off. If you have increased symptoms or you notice that the adjustment period is going on longer then you thought it would, it's probably because you're flaring again.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

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