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Is there anyone here with UC whose flares start and pain is far away from rectum?

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Posted 1/19/2013 2:45 PM (GMT 0)
I was all set to get surgery over the holidays and had (while taking a deep gulp of resignation) made the decision- only to basically get turned down because the surgery center's analysis of the biopsy slides i brought with me, conflicted with my local pathologists analysis. The locals said mild pancolitis and normal mucosa in terminal ileium. The surgery center's analysis of the same biopsies showed active inflammation in ileium and inactive inflammation (albeit non patchy, continuous) throughout the colon.

The real confusing part is that non patchy pancolitis, even if one (but not both) set of patholigists labelled it as inactive, is inconsistent with crohns. I have never had a crohns dx. But it got me to thinking- isnt basically everyone on this forum obsessed with pain in their rectum? My flares never begin the rectum, at least not in the past ten years. Indeed, I am flaring right now again, with oajn and D, but all the pain and gurgling is up in the mid abdomen, not the rectum.

Is there so much as anyone in this forum, with confirmed UC, that doesnt seem to have much or any rectal activity, and whose pain and flares seem centered way up deeper? Of course, if I have multiple D's a day, eventually I get rectal pain, and I have internal hemmies so eventually they woukd even weep blood... But heck, jpouchers esp after takedown have that issue without a colon.

Any ideas? I am planning on getting a third opinion on the biopsies, and will eventually get another scope plus a full MRI or CT (last CT was years agomand showed squeeky clean upper GI- that after decades of IBD).

Post Edited (Probiotic) : 1/19/2013 8:10:12 AM (GMT-7)

Posted 1/19/2013 3:05 PM (GMT 0)
I have no rectal activity, my pain and ulcerations are on left side, and 4 c-scope, and biopsy, and CT confirm UC, and 2 different doctors, but I also have fear sometimes what if?....

Post Edited (luna89) : 1/19/2013 8:08:07 AM (GMT-7)

Posted 1/19/2013 3:44 PM (GMT 0)
And I had almost all rectal activity, but never any pain....anywhere in the GI tract.

sue
Posted 1/19/2013 5:05 PM (GMT 0)
i have no rectal activity either or pain in that area. my doctor weirdly says my rectum looks fine during my colonscopies.
Posted 1/19/2013 7:25 PM (GMT 0)
I don't have rectum pain. I can get very severe pain but sometimes it is quite hard to feel exactly where it is coming from. Was originally DX with pancolitis UC with ileum backwash and nobody has ever queried the UC DX since.
Posted 1/19/2013 7:58 PM (GMT 0)
Thanks to all of you- nice to know that I am not a total freak for not having rectal involvement. All I ever seem to read here is "rectal meds rectal meds rectal meds" and now I know why they do nothing for me. (additionally, My symptoms get much worse in response to any 5ASA/mesalamine meds but that's another story). Right now, if I knew it was UC I'd have the surgery yesterday.... If its really crohns though, I will not remove the colon unless it is a matter of imminent life or death, given how inactive things appear there, as the reward would merely be a small gut for it to renew attacks on. And if it stays too indeterminate- well, then I will have to assume it is crohn's and just keep trying medical therapies in the hope something new comes down the pike. Will seek a third opinion on the biopsies as a first step.

Oh, stumbled on this study that indicated cases of backwash ileitis without activity throughout the colon:

www.ncbi.nlm.nih.gov/pubmed/16224214

However I am struggling to find a case of backwash ileitis mentioned in the literature where there is no, zip, nada inflammation in the colon. Like I said, time for a third opinion.

Post Edited (Probiotic) : 1/19/2013 1:19:08 PM (GMT-7)

Posted 1/19/2013 8:31 PM (GMT 0)
the pain in my flares is all through the colon which is not pleasant and I also get debilitating cramps. I have some activity lower down , but it's pretty much throughout the entire colon.
Posted 1/19/2013 8:37 PM (GMT 0)
Beat- my pain almost always starts in what I call "the spot" a few inches above my bellybutton. Then it gradually expands to the entire abdomen.

I do see that ileitis in the case of UC has been shown to have no impact whatsoever in reducing the success of jpouch surgery. For now I am renewing attempts at medical therapy, beginnign with an old friend, Imuran. It gave me some obnoxious side effects last time such as fatigue, a bit of nausea, and the occasional bizarre outbreak of bursitis on an elbow... But for now given that I have failed biologics and am allergic to 5ASA's its the only game in town, so long as surgery is off the table. (To new readers: I have failed basically all alternative treatments, from FT to LDN to rPC to worm therapies... You name it I failed on it. )
Posted 1/19/2013 8:54 PM (GMT 0)
yea rectal meds do nothing for me, Imuran has been a good tool to have, but the flares still knock the hell out of me. My flares always start with an inflamed feeling just below my stomach and it spreads so fast before I'm in deep.
I literally go to bed feeling fine and wake up in a flare, it's that fast!
Alternative treatments, I've tried them all, but just eating healthier when I'm feeling OK is a great help I think. The flares are almost like marathons that you have to train for...
Posted 1/19/2013 10:23 PM (GMT 0)
Ain't that the truth, beat- flares can come in hours, yet can take months sometimes to beat down. (well, I can beat them diwn in hours with pred but I try and minimize its level to that needed to basically function as a human, and no more.)
Posted 1/19/2013 10:24 PM (GMT 0)
I only have 2 cm of inflammation in my rectum but I have no pain unless I've been to the bathroom multiple times during the day which thank goodness doesn't happen often.
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