How to rule out Crohn's Once and For All

Is there a specific test to totally rule out Crohns? I have had my terminal illieum biopsied both during a nasty flare and not and the diagnosis is always UC...I really want to be sure especially since I have a fissure and am now getting a bad rash on my inner buttocks and around my anus.

Thanks : )

There is no one test to rule Crohn's in or out. The Prometheus testing is so flawed that major IBD centers, like the Cleveland Clinic, don't even use it for making a determination. My surgeon also discounts its results. Whats left is kind of a jigsaw puzzle, taking patient symptoms along with small bowel CT scans, colon biopsies, bloodwork and response to medications for the GI to make his/her best guess. As mentioned a zillion times before, my GI thought I had Crohn's. I thought I had UC. My surgeon agreed with me and pathology on the exised colon indicated UC.

I know this is extremely frustrating.

Sue

I have crohn's colitis, which is crohn's affecting my colon (where UC typically hangs out), now when I first got sick my CD was affecting my colon, rectom, TI and anus and it did so for the first 2-3 yrs of getting CD but in the last 15 yrs it's only stayed constant in my colon and anus, comes and goes in my rectom so the best way to rule out CD is the pattern of inflammation seen via colonoscopy, with CD there are skipped patterns of inflammation with healthy tissues in between, with UC the entire area will be inflammed with no skipped patterns and with CD the inflammation can go through the many layers of the intestinal lining, with UC it always remains surfacable only.

Also, it's estimated that about 2% of IBDers have both CD and UC, very rare but it happens.


:)

Pan colitis is just a term used to mean the entire colon is inflamed but it is still a result of having UC, typically in UC one area of the colon will be inflamed, but when it spreads to the entire colon it's referred to as pan colitis. CD doesn't necessarily affect the entire colon as UC can (pan colitis) and with CD there are skipped patterns of inflammation (healthy tissues in between inflamed), if you have pan colitis then it's safe to say that CD is not likely an issue for you.

Yes, it has been a lot to deal with, never being if full remission for the last 18 yrs now has been a hard pill to swallow so I have no choice but to take it day by day, or more like, moment to moment...guess that's just the way the cookie crumbles.

:)

No sweetie, I don't have both UC and CD, I have crohn's colitis, which is CD affecting my colon...but with no remission for the last 18 yrs does suck, but it is what it is...thanks for your caring words though.

If I were to get my colon removed, my CD would just end up affecting my small intestines anyways which is why CD is known as the "cut-away disease" because they just kepp cutting and cutting til there's nothing left to cut.

:)

pb4 said...
If I were to get my colon removed, my CD would just end up affecting my small intestines anyways

Pb4-- you state this as a fact, but isn't it a risk, not an inevitable fact- i.e. some with Crohn's Colitis (CC) i.e. CD limited to the colon, get their colon removed and do NOT have it spread.  Also, are cancer risks for long-standing Crohn's colitis and UC the same?  If so, wouldn't colectomy be indicated for some with CC even with the risk of spread, post-surgery?  I am one of those with the 90%ish UC diagnosis (including a 95% claim, but apparently useless according to both Cleveland Clinic and Mayo Clinic, Prometheus test) and am trying to decide on how much longer to fight this stupid disease without surgery, but the risk that it CC is one factor that now keeps me fighting.

 

Probiotic said...

pb4 said...
If I were to get my colon removed, my CD would just end up affecting my small intestines anyways

Pb4-- you state this as a fact, but isn't it a risk, not an inevitable fact- i.e. some with Crohn's Colitis (CC) i.e. CD limited to the colon, get their colon removed and do NOT have it spread.  Also, are cancer risks for long-standing Crohn's colitis and UC the same?  If so, wouldn't colectomy be indicated for some with CC even with the risk of spread, post-surgery?  I am one of those with the 90%ish UC diagnosis (including a 95% claim, but apparently useless according to both Cleveland Clinic and Mayo Clinic, Prometheus test) and am trying to decide on how much longer to fight this stupid disease without surgery, but the risk that it CC is one factor that now keeps me fighting.

 

With crohn's disease it's pretty much fact, which is why it's known as the cut-away disease, the chances are very great that when diseased area(s) are removed then the disease activity will at some point (usally sooner rather than later) find a new area to destroy, it's the nature of the beast with CD...unlike true UC where when the colon/rectom is removed then you're pretty much IBD free for the rest of your life unless you were misDX and actually had CD or even more unlucky to be in the 2% that have both UC and CD.

Cancer risks for crohn's colitis are pretty much the same for UC, basically the longer there is disease activity in the colon, regardless if the inflammation is due to CD or UC (usually also including severity too) the slightly the higher the risk for colon cancer compared to an average healthy person.

In general, any good surgeon will always make it clear to their UC patients that there is a risk that they may have CC rather than UC and that if that's the case surgery will not guarantee them an IBD free life...I'm sure they do this to cover their own butts but at least some surgeons will report this risk to their UC patients which is still better than not putting forth the information...especially since there is aprox 2% of IBDers that have BOTH CD and UC.

:)

pb4 said...

 

With crohn's disease it's pretty much fact, which is why it's known as the cut-away disease, the chances are very great that when diseased area(s) are removed then the disease activity will at some point (usally sooner rather than later) find a new area to destroy, it's the nature of the beast with CD...

....there is aprox 2% of IBDers that have BOTH CD and UC.

Thanks, pb4.  Now, regarding that 1 in 50 IBDers with both UC and CD stat... do you have any link or reference on that?  I have never heard it anywhere.  It's a pretty scary stat but it sounds like something that is still a hypothesis, especially in light of the fact that the medical community is still not very competent at differentiating UC and CD.

Thanks, pb4... It still seems to me, looking at the CCFA site's answer on that query, is that they are not saying that anyone truly has both UC and CD, but rather, as one my GI's told me- that a "definitive" UC diagnosis (i.e. the >99% sure type of dx) can still be changed to CD later and is in 2-6% or whatever of the cases, because "definitive" isn't worth the paper it's written on. In that case having "only" a 90% certainty that mine is UC means the real probability of it being CD (CC) may be much higher than 6%. By the way, is that CCFA 'Ask a Doctor' site running again? I recall years back when it was run by a an amazing semi-retired GI, Eugene May (?), who was incredibly patient answering questions and also, for a GI, remarkably progressive (he believed in probiotics as adjunct therapy and though skeptical of new developments like helminth therapy, kept an open mind about them.) Sadly, I recall that forum and its vast archives being suddenly shut down due to liability issues (which seems silly to me given the "at your own risk/consult your doctor first" boilerplate on the forum headers... but what can you do it today's litigation-crazy society).

Probiotic said...
Thanks, pb4... It still seems to me, looking at the CCFA site's answer on that query, is that they are not saying that anyone truly has both UC and CD, but rather, as one my GI's told me- that a "definitive" UC diagnosis (i.e. the >99% sure type of dx) can still be changed to CD later and is in 2-6% or whatever of the cases, because "definitive" isn't worth the paper it's written on. In that case having "only" a 90% certainty that mine is UC means the real probability of it being CD (CC) may be much higher than 6%. By the way, is that CCFA 'Ask a Doctor' site running again? I recall years back when it was run by a an amazing semi-retired GI, Eugene May (?), who was incredibly patient answering questions and also, for a GI, remarkably progressive (he believed in probiotics as adjunct therapy and though skeptical of new developments like helminth therapy, kept an open mind about them.) Sadly, I recall that forum and its vast archives being suddenly shut down due to liability issues (which seems silly to me given the "at your own risk/consult your doctor first" boilerplate on the forum headers... but what can you do it today's litigation-crazy society).

Ya, all I can go by is how the "ask the doctor" (who actually happens to be my GI) answered the question in the journal when I submitted it (it was kinda neat to see my question in the journal and being answered), hopefully as time goes by they'll have a more definite answer when it comes to one patient having both CD and UC, mind you with crohn's colitis, the same meds are used to treat it as used for UC so there's really no difference there at least.

I never knew about the CCFC site being "shut down" for a bit, but I do know they don't update it often enough in my opinion.

:)

I am having a total colectomy this upcoming Friday, and prior to the surgery they wanted to take some precautions regarding possible Crohn's. So I also had a small bowel series completed where I drank that barium and they used an x-ray to see the areas lit up. It was very interesting. The doctor performing the test said that 9 out of 10 times Crohn's is not part of his diagnosis. So I was relieved to hear that my small intestine looks good...it's going to have a pretty big job starting Friday, so I hope it's up for the challenge! I also was told that one of the only ways to be 100% sure about the diagnosis is done with the splice and dice test they do on the colon once it's removed. : ) Nice, huh?

I do feel it is so unfortunate that not only is our diagnosis tricky, but so is the treatment. I have pancolitis and no medications are working...my body seems to think that Remicade is a joke and though Prednisone does take away some of the pain I have had seriously horrible side effects...super long story.

I wish you all the best!!!

: ) Robin

I totally agree, pb4! With all the differences in the diseases, I don't see why it's so tough to tell one form the other. With all the scopes, CT scans, biopsies & blood work I know we've all had, you'd think it'd be a cinch to definitely diagnosis it. Yet the only consistent way I hear of to tell the difference is a pathology report. And this is said all over the boards, from pre & post-surgery patients, from GI's to colo-rectal surgeons.... it's frustrating. I know for me, as I said, surgery may be in the future- until then, it's just trying to stay afloat with meds. I guess the only way it matters to me is if I want to try Humira- then I'd push for a CD diagnosis, especially based on the fact that I have a fistula. In this way, it's nice to not get a confirmed diagnosis- if you can try meds that are strictly approved for only CD, or only UC, then a little wiggle room is a plus. Other than that..... I suppose we'll all know after surgery, not that it'll matter much by then.

good morning..... Anyway, I have an RV fistula- it started as an abscess, in my perineal area. I thought it was a bad hemmorhoid, as I'd been flaring & had eatn a big bowl of chili in the recent past! It hurt like nothing else for a couple days, then the pain started to subside. about 2 weeks after that, I'm sitting at the YMCs waiting for my daughter's swim class to end & I feel this yukky wetness... no bm's, no urgency, just sudden damp. Thought it was my period, went to the bathroom- lo & behold, it was disgusting pus & fecal matter! Ran home ASAP, called my GI, sat in a hot tub to clean everything out. I went on Cipro & Flagyl to avoid infection, it drained nasty fluids for a few dayas, then settled down, leaving a lovely, visible to the eye hole. This was last November- 15 months ago! The meds I am currently on are the mesd they use to treat fistulas- Imuran & Remciade. They've done nothing to close it up, & quite frankly aren't doing much for my UC either. I've resisted surgical repair because it doesn't bother me physically- mentally, hell yeah! Plus, I figure I'll either be getting my colon out in the next year or so (the way I've been going lately, it looks to be sooner rather than later!), so that could be taken care of during that surgery. It sucks. I like my GI & think he's pretty good, but he is sort of lackadaisical about me- his recommendation is surgery, & has been for over a year- I resist, so there's only so much he can do for me, med-wise. I understand where he's at, it's just frustrating. Anyway- BBC, what ever happened with your new GI appointment??? Do tell!