can this happen?

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Regular Member

Date Joined Aug 2008
Total Posts : 309
   Posted 12/15/2008 4:14 PM (GMT -6)   
when i was first diagnosed 1 year and a half ago they did my colonoscopy and they told me that i had pancolitis. ive been in remission ever since except for this small flare once. is it possible that they tell me next time i get my colonoscopy it can get downgraded to like protitis, Proctosigmoiditis or left sided colitis?? does that happen to alot of people?
- 23 year old female, Gatineau, Quebec
 -diagnosed with UC june 2007 panacolitis
- Asacol (6 daily)800mg
- Salofalk (1 at bedtime) 1000mg

New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 12/15/2008 5:06 PM (GMT -6)   
I was wondering the same thing because my UC is MUCH more subtle than it was when I was first diagnosed. I hope this is possible! :)

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 12/15/2008 5:16 PM (GMT -6)   
One doctor referred to my UC as pancolitis, but my others doctors don't use the term. What I  know is my whole colon can be inflamed, or sometimes it is found to be only inflamed in certain areas.
Maybe I'm missing something, but what difference does it make what it is graded? 
Either you are flaring and need more aggressive treatment to get it under control, or you are not and need to be on a maintenance regimen (whether that is diet, drugs, etc.).
Seems you are both experiencing the latter...that's good!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. 
Doing much better, but still experience anxiety that interferes with activities. 

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 12/15/2008 5:38 PM (GMT -6)   
If you were diagnosed with Pancolitis, your future flares can be limited to Proctitis, Sigmoiditis or left sided however your colon has the potential of being inflammed to Pancolitis again. So basically it means that yes it can be downgraded but it has the potential of involving your whole colon again. For instance, I have left sided and for my last several flares it has only been limited to my rectum/sigmoid area but if it gets severe enough, it can involve my entire left side again.
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
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Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 12/15/2008 10:16 PM (GMT -6)   
pancolitis is the terms used for UC affecting the entire colon and not just an area or 2. So yes, it very well can happen, flares can differ from one to the next.

My bum is broken....there's a big crack down the middle of it! LOL :)

Elite Member

Date Joined May 2003
Total Posts : 30976
   Posted 12/16/2008 3:51 AM (GMT -6)   
flares differ depending on the extent of the inflammation. Remember the pattern of UC...upwards inflaming, downwrds healing The rectum will be involved becasue that's where it starts...
Think thermometer.

That's why I stress the rectal meds...because early symptoms will start there if the rest of the colon is quiet. They may not be the symptoms one is used to during a flare.

When the colon heals..from the top of the inflammation to the rectum...symptoms are usually seen as still flaring...but they are usually the same symptoms when a flare has started after being in a normal state.

Eventually one can learn to deal with flares very early and have one's flare/inflammation areas remain in the rectum.

*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!

Regular Member

Date Joined Apr 2008
Total Posts : 191
   Posted 12/16/2008 3:44 PM (GMT -6)   
I d'ont understand exactly what your saying here as I have severe left sided colitis that has put me in hospital several times this year but no longer have any inflamtion lower down sig area or rectum, in my latest colonoscpy the GI said my' tail- end' as he put it was completely clear,but 35cm down my left side were 'very nasty,'his words again,bad enough for him to offer me sugery,personally I d'ont do any rectal meds any more,because I d'ont belive they any difference,and often though they were making things worse,as the lower part of my colon cleared up nicely since I stopped.

Regular Member

Date Joined Sep 2007
Total Posts : 365
   Posted 12/16/2008 5:17 PM (GMT -6)   
Last colonoscopy I was told I had pancolitis....from what I understand the risks of developing colon cancer are greater with pancolitis. I would be very relieved to hear for certain that it can be downgraded based on active inflammation that the time, instead of a permanent doom-and-gloom development of UC that cannot be undone....good post.
34 yr old male. UC for 14 years. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!) "I poop in the woods because I can"

Regular Member

Date Joined Jan 2006
Total Posts : 479
   Posted 12/21/2008 4:19 PM (GMT -6)   

Cyn555 - I was diagnosed with severe pan-colitis when I had my first flare in 2000, and was hospitalised.  But, in the following 8 years - I have had numerous flares - all of them left-sided.

I have also read many times that this is quite common and that the first flare you suffer is often the worst. This was definately the case for me!

Abatacept Trial since Feb 2008 (Maintenance Period)
Back on Pred - 1mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic

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