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Especially for anyone whose dx changed from UC to CC or CD

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Crohn's Disease
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Posted 5/14/2012 2:13 PM (GMT 0)
Where do your flare pains tend to begin? My pain generally always begins mid abdomen at a point a few inches above my naval, and just below where my left and right rib cages meet... i will often have pain bother me there, with no pain whatsoever in the rectum, although eventually if the flare expands it will spread to the rectum as it gradually encompasses the lower abdomen. I always believed UC flares are supposed to begin in the rectum. Officially, I've always been labelled UC (pancolitis), based on biopsies, and supported by 95% confidence on the admitedly controversial Prometheus blood test.

On the other hand, biopsies have been noted a bit ambigious on occasion, and a colonoscopy last year showed a bit of inflammation past the ielo cecal valve that was noted as most likely backwash ileitus. I twice tried smoking and nicotine patches (I was a lifelong non smoker) for experiments lasting a few weeks, but found that they not only didn't help, but increased urgency, along with the unpleasantness of higher blood pressure, headaches etc ..

If I really have CD and not UC it would of course have a major impact on any surgery decision if it ever comes to that, but of course it also impacts on what new treatments to try, in many cases.

Post Edited (Probiotic) : 5/14/2012 8:17:42 AM (GMT-6)

Posted 5/15/2012 9:58 AM (GMT 0)
Anyone? Buehler?
Posted 5/15/2012 12:05 PM (GMT 0)
My first flare was a classic UC: severe inflammation in the rectum up 25 cm, completley fine at 26 cm and all the way to the cecum where I had a patch of inflammation and a normal TI. My next had moderate transverse inflammation, then my third colonoscopy had small patches (I was on Entocort) of very mild inflammation around my colon and two small "discrete" ulcers in my ileum. I haven't really had too much pain with any of my flares, even though I have flared more than I have not in my 2.5 years with this disease.
Posted 5/15/2012 2:43 PM (GMT 0)
I hesitated to respond at first, Probiotic, because I'm not sure what your question is. I don't think anyone here can tell you whether you have CD or UC. In fact, my GIs (all 3 of them, sequentially) have not really firmly stated which IBD I have, and frankly I don't care. I treat my illness as if it was Crohn's, because most of my issues have arisen in the upper part of my GI system. However, now that I've been gluten free for a year and I don't have soft stools or lots of gas I am willing to reconsider this. In any case, I am managing my illness with 5-ASAs and surgery is not on the list. My GI is not in hurry for me to have another scope (my last was in 2008) which is fine with me.

FYI, my first diagnosis was UP (flexible sigmoid scope only). My first colonoscopy (2 years after the flex-sig) showed inflammation at the rectum and cecum. My 2nd scope showed inflammation at the rectum and small ulcers in the TI. I have never had a pillcam. Barium series have never shown inflammation in the small bowel and abdominal CT in 2011 did not either. Gastroscopies have consistently shown gastritis. I had an esophageal stricture treated with a balloon dilation in ~2004. Biopsies have not been definitively UC or CD.
Posted 5/15/2012 2:51 PM (GMT 0)
Well, I've always had a Crohn's diagnosis, but do have pan Crohn's colitis... (With 'relative rectal sparing' <_<)

My pain seems to be in quite a similar place to yours, namely central and above the belly button. I don't have the 'classic' Crohn's lower right quadrant pain very often, though occasionally I do. Pain that high up probably comes from the transverse colon. Speaking for me, I'm not really sure why the pain would present there more than it does on my right side, but it just does.

Some 10% of folks with IBD have an indeterminate diagnosis, ie, it could be UC or Crohn's. Sometimes the distinction becomes clearer later, but not always. Except for surgery, I don't think the treatment for Crohn's colitis is much different to UC - the same meds tend to be used.
Posted 5/15/2012 4:20 PM (GMT 0)
Thanks for the good replies. I dont expect to diagnose this based on pain locations, but I am allergic to all mesalamines and so, being officially UC, a jpouch crosses my mind from time to time since I rarely get 100% remissions. However, since Even my biopsies have been a bit ambiguous on occasion, I am wary to risk surgery. I did have barium and CT studies of my upper GI show up all normal a few years back. i think I'll ask for a pillcam though.
Posted 5/15/2012 6:10 PM (GMT 0)
From what I've learned, a jpouch for CDers may not come without complications compared to a jpouch for UCers....surgeons will always (should always) go over the risk for IBD patients that don't have a conclusive DX as to whether they have CD or UC for sure before proceeding with any kind of colon surgery.

I have crohn's colitis and was told that having my colon removed or a jpouch procedure would not guarantee that I wouldn't end up having issues again in my small intestine (my small intestine has been CD free for the last 19 yrs, as when I first became sick my CD was affecting my small intestine, colon, rectum and anus with perianal crohn's skin tags) CD has remained constant in my colon and anus, comes and goes in my rectum and as I mentioned, my small intestine has not been affected the last 19 yrs out of the 21 yrs I became sick with CD.
Posted 5/15/2012 7:19 PM (GMT 0)
@Probiotic - Have you ever talked to a doctor about surgery? If so, are they happy with the idea of a jpouch? I know when I talked to my consultant about surgery a few months ago, he told me that jpouch was simply not done for Crohn's patients and that it would not even be a remote possibility for me. That said, I do have active terminal ileum disease with a known stricture, so it's not really surprising in my case. It may be different for somebody who has had Crohn's colitis for a long time without any sign of small bowel disease.

For whatever it's worth, the chances of Crohn's returning after surgery for strictly Crohn's colitis patients is relatively small - 10-20% after ten years, off the top of my head. The stats are more like 70% if you have small bowel disease as well. (I hope I'm recalling these statistics correctly, but I think I am...) I doubt supremely much that would include 'backwash ileitis' incidentally, as that is a feature of UC rather than Crohn's.

I can understand why you are wary of surgery, though. I couldn't begin to say whether you had UC or Crohn's, but, put it this way, Crohn's does not sound like an impossibility for you. That said, I would not let it put you off surgery entirely. Heaven forbid, but if it ever got bad enough, surgery may possibly be the only solution. Hopefully it'll never come to that, though.
Posted 5/16/2012 3:43 PM (GMT 0)
Thanks again, everyone. I had a surgery consult a few years back and reviewing everything, they feel i almost certainly have UC and felt I am a good jpouch candidate. But the way my pain always starts (and, if I get remission, which is not that often nowadays, ends) mid abdomen and not rectally, combined with "only" 95% certainty of UC on prometheus testing plus occasionally confusing biopsies, makes me very much fear a jpouch if it turns out crohn's one day- I just dont tryst doctors. I am so physically active (even with thus dd, on good days) tho that a perm ileo sounds like anightmare for my outdoorsy lifestyle. Had a med free 10 year remission once but true remission is getting increasingly elusuve for me now.
Posted 5/16/2012 5:41 PM (GMT 0)
Thanks for the stats, NiceCupOfTea- yeah I do need to get another surgery consult since it has been a few years. I want to schedule a pillcam as well. If I ever do surgery I would prefer to try for a jpouch rather than wonder if maybe it mjght have worked, but the crohn's possobility, however slim, makes it scarier, that's for sure. Ah well, folks, thanks for listening.
Posted 5/22/2012 1:49 PM (GMT 0)
I was dx'd w/Ulcerative Procto-sigmoiditis in '82, then pancolitis in '92, then had a jpouch in '93. Now, the doctors are thinking I have (and have had) Crohn's due to the late development of complex fistulas. For 6-7 years prior to the fistulas, I was sick with flu-like symptoms off-and-on, along with some pouch dysfunction. No doctor was able to tell me what was going on, why I was sick, treat me, etc. Not fun times.

I'm having a 3rd MRI and an EUA in the next couple of weeks, but even with that, I'm quite sure they won't be able to give me a certain dx. of Crohn's based on biopsies or imaging. That dx business is just the nature of the beast, I think, in many cases. So now I'm looking at possible pouch removal, which is a HUGE surgery and even then, the surgeon says if I do have Crohn's, some little nests of Crohn's disease can be left and can continue to cause problems.

So --- based on my experiences alone, I'd say that if there is ANY chance you have Crohn's, I would absolutely not recommend a j pouch.
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