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pancolitis - how many of us on immunos??

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Posted 1/21/2008 2:07 AM (GMT 0)
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.
Posted 1/21/2008 2:37 AM (GMT 0)
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.
Posted 1/21/2008 2:39 AM (GMT 0)
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
Posted 1/21/2008 2:45 AM (GMT 0)
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.
Posted 1/21/2008 3:31 AM (GMT 0)
Yup - pancolitis here too. I'm on 6-MP.
Posted 1/21/2008 3:55 AM (GMT 0)
ok, so that's me and 4 others so far. anyone out there with pancolitis NOT on immunosuppresants?
Posted 1/21/2008 4:18 AM (GMT 0)
Pan Colitis, Asacol only
Posted 1/21/2008 5:05 AM (GMT 0)
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
Posted 1/21/2008 11:15 AM (GMT 0)
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
Posted 1/21/2008 11:57 AM (GMT 0)
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
Posted 1/21/2008 1:26 PM (GMT 0)
Pancolitis here, on Imuran, though it doesn't seem to be doing much besides taking money out of our budget.
Posted 1/21/2008 3:13 PM (GMT 0)
I have pancolits and only on Lialda (pred once), thus far (knocking on wood).

Posted 1/21/2008 4:08 PM (GMT 0)
Pancolitis, no Imuran. Seem to be doing well on Asacol.
Posted 1/21/2008 4:41 PM (GMT 0)
Asacol Only - so far!

Posted 1/21/2008 5:32 PM (GMT 0)
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
Posted 1/21/2008 5:35 PM (GMT 0)
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.
Posted 1/21/2008 5:42 PM (GMT 0)
Daughter 8 - pancolitis on 6mp
Son 16 - Left sided colitis (last scope '02, could have spread since then) on Imuran.
Posted 1/21/2008 6:27 PM (GMT 0)
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.

Posted 1/21/2008 6:57 PM (GMT 0)
I have pancolitis. No immuno's for me. 3 Asacol, 3 X per day.
Posted 1/21/2008 8:22 PM (GMT 0)

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.

Posted 1/21/2008 8:43 PM (GMT 0)
pancolitis and on asacol only. When flaring Entocort and asacol
Posted 1/21/2008 10:17 PM (GMT 0)
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.

Posted 1/21/2008 11:50 PM (GMT 0)
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.
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