pancolitis - how many of us on immunos??

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UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 1/20/2008 9:07 PM (GMT -6)   
They say that pancolitis is trickier to treat, so I am just curious.... for those of you with pancolitis, are you on an immunosuppresant? I am just wondering if people with pancolitis are more likely to end up on an immunosuppresant than someone with a less extensive form of UC... figured I'd take an informal poll.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 1/20/2008 9:37 PM (GMT -6)   
I started out okay on Asacol, then decided to taper myself (bad idea!) and ended up flaring, on pred, steroid dependent, and now on Imuran.

So, with you and me, that makes 2 so far.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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MicheleV
Regular Member


Date Joined Sep 2004
Total Posts : 233
   Posted 1/20/2008 9:39 PM (GMT -6)   
Raising my hand!
I have pancolitis...my colon is a hot mess. Well, its better right now, but its pretty much all scarred up.
Imuran is my drug of choice cool
Currently in remission since September 2004!!!  I am on Imuran 150 mg and am LOVING life!


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/20/2008 9:45 PM (GMT -6)   
I, too, have pancolitis and am on imuran (back on after being off for a week) but if it doesn't kick in soon we are moving to remicade.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/20/2008 10:31 PM (GMT -6)   
Yup - pancolitis here too. I'm on 6-MP.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 2xScoop of Sustagen Sport per day;
    - 1xBIOCeuticals UltraBiotic 45 per day, 1xBIOCeuticals SB FlorActiv per day;
    - 1xHeaped teaspoon of Metamucil smooth orange powder 3 times a day.


UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 1/20/2008 10:55 PM (GMT -6)   
ok, so that's me and 4 others so far. anyone out there with pancolitis NOT on immunosuppresants?
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


RickBeck
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/20/2008 11:18 PM (GMT -6)   
Pan Colitis, Asacol only

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/21/2008 12:05 AM (GMT -6)   
Pancolitis too; I'm on 2 immunosurpressents right now.... 6-mp & Cyclosporine.

Enemas aren't as effective with Pancolitis because they don't treat ALL the inflamation. I think that is the real difference in treating the different versions of UC....The term Pancolitis doesn't discribe how severe the colitis and inflamation is, all it does is discribe the location of the UC.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 1/21/2008 6:15 AM (GMT -6)   
I had pancolitis but I'm not on Imuran.

A few interesting things about pancolitis. No matter what form of UC you have the chances of a relapse are the same. So if you are in remission you have the same chance of a flare occuring wheter you had left sided or pancolitis. I find this unusual but it is true.

Remember that the people on here are probably not an unbiased group. You are gonna get newbies and people strgulling with the disease. So be definition you are gonna get a higher percentage of Imuran users than is the normal.

The stats say that 60% of UC cases are mild. I asked my GI did this mean that most of the left sided cases were mild and that most the pancolitis were not. He said No. You can have mild pancolitis with about the same proability as mild left sided.

So the points I take from this is that it is NOT the location of the disease that indicates how bad a flare is.

But you are right to say that pancolitis is harder to heal from. But I guess that is influenced by the fact that there is "more" colon- wall to heal. A much longer path! So it seems pretty natural that pancolitis will take longer to subdue.

D


800 mg Asacol a day
500 mg Asacol suppository now and then!
Fibre supplement, Iron supplment,Probioitcs
Balanced Diet, Reduced Stress
 
"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."
 
 
 
 
 
 
 

Post Edited (damo123) : 1/21/2008 5:29:21 AM (GMT-7)


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 1/21/2008 6:57 AM (GMT -6)   
I've got pancolitis...and am on imuran. GI is now considering humira or remicaide instead.

imuran 125mg
asacol
current steriod taper 20 mg (holiday stress maybe?)
flagyl until tomorrow

UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 1/21/2008 8:26 AM (GMT -6)   
Pancolitis here, on Imuran, though it doesn't seem to be doing much besides taking money out of our budget.
---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC (pancolitis)
Currently in mild flare
2 400mg Asacol 4X day 2 Lialda/day (we'll see how that goes)
5mg Prednisone done for now :)
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/21/2008 10:13 AM (GMT -6)   
I have pancolits and only on Lialda (pred once), thus far (knocking on wood).

AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


Picton
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/21/2008 11:08 AM (GMT -6)   
Pancolitis, no Imuran. Seem to be doing well on Asacol.
Moderate pan-UC, diagnosed 12/07.
Asacol 4 x 3, Colocort nightly, probiotics, fish oil, vitamins.


BumTum
Regular Member


Date Joined May 2006
Total Posts : 304
   Posted 1/21/2008 11:41 AM (GMT -6)   
Asacol Only - so far!

  • Pancolitis since 5/06 at age 50, IBS since childhood
  • Degenerative Disc Disease/Spinal Stenosis - L4 and L5
  • Prescribed: Asacol, Atenolol, Zoloft, Synthroid, Menest
  • Prescribed: Xanax & Hydrocodone as needed
  • OTC:  Probiotic 15-35, Multi Vitamin, B Complex, Turmeric, Fish Oil, Biotin
 
 
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 1/21/2008 12:32 PM (GMT -6)   
This post is a great idea.

What we should do after maybe we get a few more responses is get the probability of a pancolitis sufferer being on imuran....we shld then do a separate post and caluclate the probability of a non pancolitis UCer being on Imuran. This would allow uo to compare pancolitis verus non pancolitis. I'm willing to bet that there is no difference between both groups i.e. the prob of being on Imuran is the same. Hey we could even do a medical paper on this!!!!!

We should to lots more surveys like this on this site so that we can quantify many of the ideas we discuss daily! There is too much referal to links and not enough discussion of actual figures.

D
800 mg Asacol a day
500 mg Asacol suppository now and then!
Fibre supplement, Iron supplment,Probioitcs
Balanced Diet, Reduced Stress
 
"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."
 
 
 
 
 
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 1/21/2008 12:35 PM (GMT -6)   
I think I have pancolitis (not sure, b/c when I was really sick, I was too inflamed to get the scope all the way through my colon...the dr. didn't want to risk perforation). My last scope just showed mild rectal inflammation. I'm just on Asacol and Rowasa.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 1/21/2008 12:42 PM (GMT -6)   
Daughter 8 - pancolitis on 6mp
Son 16 - Left sided colitis (last scope '02, could have spread since then) on Imuran.
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


NRKE
Regular Member


Date Joined May 2005
Total Posts : 56
   Posted 1/21/2008 1:27 PM (GMT -6)   
I have pancolitis and i've been on 6mp for about 2yrs now.I was at 100 mgs but my GI changed it to 25 mgs when i started Remicade.

Pancolitis/IBS diagnosed Oct. 2004 
Colazal 3,3x a day,6mp 25 mgs,Lomotil,Bentyl as needed, Rowasa,Canasa as needed.Remicade,3rd infusion Dec.19th.
30 mgs prednisone,tapering.
Probiotics,Olay vitamins,Calcium supplement.
 
      Stop the ride I wanna get off.


Deacon Blues
Regular Member


Date Joined Oct 2006
Total Posts : 312
   Posted 1/21/2008 1:57 PM (GMT -6)   
I have pancolitis. No immuno's for me. 3 Asacol, 3 X per day.
Diagnosed with UC in 1999
PANCOLITIS-mild to moderate
3-400mg Asacol 3x per day
44 yrs old


Lou95
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 1/21/2008 3:22 PM (GMT -6)   

I have pancolitis, but was prescribed Asacol only.  Started out with 800 mg. three times a day, but only twice a day since no longer in a flare.

I honestly have more problems with internal hemis than the pancolitis as far as pain goes.  I had a very "noisy" stomach (you could hear it across a room) and terrible diarhea, but never any pain when I was in a flare.  I definitely consider myself lucky after reading this forum.  I'm a big wuss when it comes to pain.


Age/Sex:  50 & female
Diagnosed:  2005 pancolitis
Medications:  800 mg. Asacol twice a day - in remission; 1200 mg. fish oil supplement nightly,
1 Dulcolax stool softener nightly, Effexor-XR 75 mg. daily
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 1/21/2008 3:43 PM (GMT -6)   
pancolitis and on asacol only. When flaring Entocort and asacol
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 1/21/2008 5:17 PM (GMT -6)   
I have pancolitis but am only on Remicade now. The combo of 6MP (was on for over 2 yrs.) started causing bad side effects when combined with Remicade, so I was taken off of the 6MP.

Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/21/2008 6:50 PM (GMT -6)   
Uh-0h; just talked to my GI today and since I had bleeding last night and today the next step is Imuran. I have pancolitis. How are we going to count me, now? Non-immuno, for now? I guess that is right.
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!

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