Is pancolitis the worst?

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Regular Member

Date Joined Jan 2009
Total Posts : 307
   Posted 1/22/2009 8:05 PM (GMT -6)   
Is pancaolits the considered the worst form of UC (other then left sided or just rectal)?  If so, does this mean pancolitis sufferes have worse and more frequent flares?
Age: 25 / Male / Florida
Diagnosed: 11/08
Currently on Asacol 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Started taking chamomile tea and multi vitamins (waiting for results)

Regular Member

Date Joined May 2008
Total Posts : 48
   Posted 1/22/2009 8:21 PM (GMT -6)   
I have pancolitis but a mild form. It really depends on the amount of inflammation rather than the extent as far as symptoms are concerned.

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 1/22/2009 8:32 PM (GMT -6)   
I have a severe form of pancolitis and the effects of a full blown flare are felt's horrible. However, some have severe left-sided UC or severe UC in the rectum. It does vary on the intensity of the UC. Being one that has the severe effects throughout I would say it is difficult to say that it could get much worse. However, my current flare is extreme but being maintained in the middle and to the this is not fun either.

You pose an excellent question. I also feel that one's ability to withstand the pain also has something to do with the severity and level of harshness this disease can cause. Unfortunately, we all develop some sort of pain tolerance b/c of it.

I believe anyone with any level or form of UC suffers a great amount b/c we all have to make adjustments to the disease and our needs. Unfortunately some do seem to suffer more than others b/c of our reactions to certain medications, or the lack thereof. It's horrible to have an allergic reaction to a medication that should be helping while already in a brings you to a very low place. It's also a very frustrating disease, because there really is not immediate answer for how to get the flare under control b/c we just don't know what will work for you until you try it.

This is definitely a disease that I wish could be treated in more non-intrusive ways, but it's not.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!

Regular Member

Date Joined Dec 2008
Total Posts : 274
   Posted 1/22/2009 8:33 PM (GMT -6)   
I too was recently diagnosed with pancolitis and have wondered the same things. I never had the amounts of blood some people describe here, but had major D. I lost about 20lbs. I dont know if it makes the symptoms worse, but it might take longer to get it under control, as what people here say is that the inflammation works from the top down. I guess it has farther to go with pancolitis. I'm sure people on here have had it longer than me and will be able to provide more info. I am interested to know as well...I am sure I will find out anyways.

Chuck - 28 yrs and counting
Diagnosed w/ UC Dec 08 - pancolitis
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg 30mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"

Veteran Member

Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 8:43 PM (GMT -6)   
I once had an almost ten year full, med-free remission from extensive pancolitis, and I have heard others with simple proctitis who never get a remission at all, so extent of disease and severity or flaring are two different things, i think. However, I do assume that long term prognosis e.g. the chances of eventual surgery etc. are highest for pancolitis.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade

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