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UC or Crohns? So confused - please help

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Posted 12/8/2010 3:50 AM (GMT 0)

Hey guys,

This is my first time posting on the Crohns forum - I usually post over at the UC forum.  I was diagnosed via colonoscopy and biopsy with UC in Nov. 2008.  I had surgery (ileorectal anastomosis) about 4 months ago for my UC and have been recovering (improvements every day but I know it's a slow process).  Well, I had some blood tests done recently just to see if there were any changes post surgery and the results are confusing and frustrating.

My doctor ordered an IBD Differentiation panel (Saccharomyces Cerevisiae) - ASCA, both IGA and IGG.  Well, I tested positive on both indicators (94.3 for IGA and 61.2 for IGG).  Apparently, a high positive for IGA would indicate Crohn's Disease, but this seems to contradict every test I've had up until this point:

11/2008 - colonoscopy and tissue biopsies - dx with UC

4/2009 - flex sig, confirms UC

1/2010 - CT scan - confirms UC, no activity in small bowel

3/2010 - colonoscopy - dx with UC

As far as the blood test I just had, I think it's a Prometheus test, but I'm not sure.

How accurate are these tests?  I don't even know how I should interpret this.  This appointment and test were not needed - I just did it out of curiosity, but now this doctor is recommending a colonoscopy to confirm whether it is UC or Crohn's but I'm not sure I even want to go through with another colonoscopy - I had one back in March and I just had this surgery in July.

What should I do?  Past colonscopies never demonstrated any skip patterns which is common with Crohns, just uninterrupted inflammation in most of my colon (60 percent).  Now, all I have left is my rectum, and I know I have some mild inflammation there which would show up on the test, but I don't know why that would be Crohn's now or why I'd need a colonoscopy.

Please advise.

Thanks,

CollegeGrad85

______________________________

25 years old - pre-law student

dx with UC 11/2008

On Lialda, Apriso, Colazal, Prednisone

dramatic flucations - days with 1-3 bms and some days with up to 20

ileorectal anastamosis surgery on 7/13, wound infection in the resulting weeks.

60-70 percent better now - and on the lookout for further approvement on the road to "normalcy."

Post Edited By Moderator (Nanners) : 12/8/2010 7:44:19 AM (GMT-7)

Posted 12/8/2010 5:57 AM (GMT 0)
The promethius test, aka serology 7 test, is a good indicator that you have IBD but it not 100 % accurate of what type. It is really helpful for those that are trying to distinguish whether you have IBS or IBD but the best diagnostic tools are colonsocopies with biopsies, endoscopies, or pill cam tests. Crohn's disease and Ulcerative colitis can be really similar when in the colon and many people are misdiagnosed with U.C. first. There a couple on here that have recently been diagnosed with Crohn's disease after years of having a U.C. diagnosis. You are right that Crohn's can skip and is not always continuous but it can be continuous too. Have you ever had any inflammation in your small bowel, stomach, throat, or mouth sores? Do you have problems with eye inflammation or arthritis? Not every person will have all of these symptoms but these are also common symptoms of crohn's disease. You may also have what is referred to as Crohn's colitis which will virtually mimic U.C. and affect mainly the colon/rectal area. Crohn's and Ulcerative Colitis are treated in much the same way but hopefully they can figure out a proper diagnosis soon so that you can get on the correct med.
Posted 12/8/2010 6:49 AM (GMT 0)
I've never had any those additional symptoms (eye, throat, stomach inflammation) or arthritis.  I don't know if I have small bowel or stomach inflammation at all.  I guess I'm somewhat skeptical since I've had 2 colonoscopies (one with biopsies) both of which indicated UC and one flex sig with biopsy which also indicated UC.

Is the pill cam also an accurate test since it can show what is in the small intestine?  Maybe I should try that over another colonoscopy?  I did have a CT scan of my small bowel last January which showed no inflammation.

Posted 12/8/2010 7:36 AM (GMT 0)
I would push for the pill cam if CD is suspected.  You have already been through all the other stuff.  

UC inflammation and CD inflammation test the same on biopsy.  If you have the inflammation in your small intestine you would crohn's or crohn's colitis.  I would definitely  push for the pill cam.

Posted 12/8/2010 8:04 AM (GMT 0)
I am a big fan of the pill cam test. It was one of the biggest tools my G.I. used during my diagnosis because my disease was located where a scope could not reach. The only downfall of the pill cam is that you can't take a biopsy but you already know that you have some sort of IBD. What has your doctor said about the biopsies that they have already taken of your colon? While the inflammation looks similar on biopsy, the tissue level is usually deeper on U.C. I believe. (it may be viseversa)
Posted 12/8/2010 9:11 AM (GMT 0)
I would not stress too much about it and would not have a scope just to check that out. I have been dx with both and the doc I am seeing now thinks its UC but he is still treating me like I have CD
Posted 12/8/2010 2:55 PM (GMT 0)
Thanks for the info - I'll push for the pill cam test. My CT scan showed no inflammation in my small intestine, but that was done almost a year ago - last January.

Also, biopsies showed that the level of inflammation and penetration is more similar to UC, not CD.

These diseases have to be extremely similar...it's just so frustrating that 99 percent of all other testing indicate UC except for this one, IBD Serology 7 blood test.
Posted 12/8/2010 4:29 PM (GMT 0)

Hi

I had what seemed like every test and one of the last tests was Prometheus 7. The test result came back that I did not have CD. My GI then apologized for even asking me to take this very expensive test as in her opinion it is unreliable. I then had the pill cam. My issue is small bowel and unfortunately the ulcers were crystal clear and the diagnosis was 100%.

So based on my own experience I would forgo the Prometheus 7 and get the pill cam.

I hope you get an accurate diagnosis and one that does not include CD.

David

 

Posted 12/8/2010 5:33 PM (GMT 0)
Thanks David -
I'm going for the pill cam. That should provide some definite conclusions. Like I said, based on my small bowel CT scan (which concluded that I had no ulceration in the small intestine - I'm inclined to think that all of the tests up to this point have been right and this was a fluke, but I'll find out for sure.
Posted 12/8/2010 6:48 PM (GMT 0)
They are treated very similarly, so unless you need surgery (like I just experienced), it won't really make a big difference.

I was diagnosed UC (classic symptoms and presentation). Just had surgery to remove colon (when drugs all failed). Colon looked great. Small intestine was awful.
They discovered that all this time, it has been Crohns.

By the way, my Prometheus test cost $1500 and said UC. The pathologist and surgeon both said 100% Crohns.
Posted 12/9/2010 2:45 PM (GMT 0)
CollegeGrad, I too was dx UC, then my doc changed it to CD based on the fact that I had skip patches in the colon and some inflammation in the cecum/ileum area (when most of the other inflammation was in the left colon). Then this last C-scope (just a couple weeks ago), he basically said I seem to have symptoms of both, and he's going to call it "indeterminate."

I'm naturally a very curious person and "indeterminate" is really annoying to me. But to my doc's point, as long as my current meds are making me feel better, there's nothing wrong with staying the course where I'm at and not having a bunch more tests to definitively rule our one or the other.

I know a lot of people here and on the UC boards might not agree with this approach, but in my case the disease has been pretty mild overall. I imagine that if you have more severe disease (and since you've had surgery, it sounds like yours is more severe), it might be more important to find out for sure. Just my 2 cents!
Posted 12/9/2010 2:49 PM (GMT 0)
often I think it's the same thing or better there are two types of crohn, that fistulizing, and that inflamating, the second, perhaps, is the same of uc, just hit different parts of bowel. I was diagnosed with uc, then they found my ileocecum inflamed (along with the colon and the rectum) so they said it's crohn, but still have doubts about the biopsies. so it's definetely crohn, but if years ago they had removed my rectum and colon thinking it was colitis, now I'd know it's crohn.
Posted 12/9/2010 6:39 PM (GMT 0)
Had my annual pouchscopy (subtotal colectomy 1981) and doctor sorry to inform me that my terminal ileum looking inflamed and displaying crohns type symptoms. He said he has seen quite a few patients who were originally diagnosed with Colitis presenting these symptoms. Anyone else out there with similar story?

Hichik
Posted 12/9/2010 8:06 PM (GMT 0)
Plenty of us have started with a UC diagnosis. It is very frustrating.
Posted 12/9/2010 8:37 PM (GMT 0)
College, CT scans cannot see/show internal inflammation of the intestines.  Getting the CT done is looking for other abnormalities and/or problems along the whole digestive tract.  But my GI gave me the understanding it would not show what he wanted to see, it was a hoop to jump through for insurance to make sure the right problem was being looked for before getting the pill cam.
Posted 12/9/2010 10:42 PM (GMT 0)
Another reason why I'm inclined to think I have UC rather than Chron's is because I no longer have any bleeding, which I had before my surgery (despite still having my rectum intact).

Isn't bleeding pretty common with Chron's as with UC? Are there any other differences in symptoms I should be aware of that might help in determining a diagnosis?
Posted 12/9/2010 11:10 PM (GMT 0)
No - bleeding is much more typical of UC than Crohn's. Crohn's colitis (CD in the colon) can cause bleeding but it is usually not nearly as extreme as the bleeding you get with UC that is badly flaring.

The whole clinical picture is what the doctor should be looking at as the basis for treatment and diagnosis decisions. As someone else said, treatment for the two is now very similar up to the point where the colon has been removed in UC patients. At that point, it is assumed that there is minimal need for maintenance treatment especially any systemic meds. For CD patients, removal of the colon may help but there is usually still a need for systemic maintenance meds.

So going with the clinical presentation, informed by test and lab results, is the key.

In your case, your clinical presentation, as you describe it, makes it sound like there's a question as to whether you are responding to your current treatment regimen.

If you're not responding to your current treatment plan then it would make sense to do more testing in my opinion. If you are having up to 20 BMs a day despite surgery and pred - well I'm not sure I'd call that having a good response to treatment. In my experience, as long as you're on prednisone it may give a falsely optimistic picture of your health.

Did the doctor say whether your current symptoms are typical of someone with UC who is 4 months post-op? Perhaps he wants to do the scope because your clinical presentation is not in line with the recovery he usually sees in UC patients.

Since your current meds do not appear to include an immune modulator or biologic, he may be realistically concerned that you will flare if you really have Crohn's unless you have something more on board.

And recent research into pouchitis suggests that it may be it's own form of IBD that requires ongoing treatment including immune suppressing meds. Diagnosis of pouchitis requires at least a sigmoidoscopy.
Posted 12/9/2010 11:23 PM (GMT 0)
Thanks - I'm scheduled for a capsule endoscopy next week so that should help. I really think this one Prometheus test is an aberration. I'm 80 percent better post surgery - less bms - about 5-6 a day now, but still diahrrea and urgency at times, but I attribute that more to the long time it takes for the digestive system to stabilize post-surgery and the inflammation I still have (in my rectum). Since '08, I've had 2 colonoscopies with biopsies and 2 flex sigs (one with biopsy) that both indicate UC - no question, not even indeterminate.

Oh well - we will see. Also, I never had nausea, vomiting or other similar systems associate with Chron's, and my colon was 60 percent infected with no skip patches.
Posted 12/10/2010 12:09 AM (GMT 0)
college stay quite and don't worry, the endoscopy will reveal any inflamation, but I'm sure you haven't at this time.
don't begin to fear the future as for now they said you have uc and here in italy that prometheus thing doesn't exist so you neither had the doubt, as here the only thing they use to determine if it's colitis or crohn's is the biopsy!
Posted 12/10/2010 12:30 AM (GMT 0)
This is a question near and dear to my heart. I started out with Crohns diagnosis in 1981 after severe hemorrhaging (which they never did find the source for). The diagnosis in those days was purely by the colonoscopy. So I was the unusual Crohnie with severe bleeding (I ended up with 2 fistulas, one of which healed on its own, the other was closed surgically).

Fast forward to 1992. A C-diff diagnosis in a new location (we had moved 2 hours away from my GI, but I was still making the trek 'cause I liked him) forced me to consider switching to a closer GI. He pronounced me a UC patient after a thorough reading of my humongous file. His partners weren't so sure, and neither was I, so we left it at possible overlap syndrome (UC and Crohns)! Since the medications weren't really changing, his opinion was that the actual diagnosis didn't really matter. He thought the multiple bleeding episodes, and the fact that my inflammation was large intestine meant Crohns.

So, I have now switched to one of the partners (long story I will tell in another post), and now that I have had a fistula since August of 09, he considers me a CD patient. Whatever....

He has never been interested in pinning it down for sure, why bother if the treatment is the same? But now that I will be getting a second opinion (to see what to do about the fistula), it will be verrrrry interesting to see what the new doctor will say. I am thinking the pill camera might be a great option for this next colonoscopy. It would be great to have a picture of the whole system without disturbing the fistula (since I have no idea where the fistula hooks up).

Longwinded way for me to say -- I think the pill camera is a great idea!

Sudsmom
Posted 12/10/2010 12:50 AM (GMT 0)
Thanks guys for all the support - I'll let you know what the pillcam reveals. Regardless of what I really have, I don't regret the surgery, as I have noticed dramatic improvement and I can begin looking at law schools now - something that was somewhat unthinkable before.

Really, what I'm dealing with now is probably pretty mild, but there is some frustration when you have conflicting results. I am hopeful and optimistic that new research - especially in stem cells - will yield new treatments and possibly a cure as well so that future generations have more information and better treatment.
Posted 12/29/2010 2:57 PM (GMT 0)
Hi guys, I have an update:
My insurance won't cover the pillcam without a small bowel follow-through first, an ECG, and a colonoscopy. I opted to proceed just with the small bowel follow-through, since I don't have enough colon left for a full colonoscopy and I've already had several scopes done.

The findings came back normal - no abnormalities in my small intestine, no strictures or obstructions. So overall, very good news I think - which leads me to discount the blood test results pointing to possibly UC and Chrons.

I think the issues I'm dealing with now are the lingering repercussions of my surgery and the inflammation I have in my rectum.

CollegeGrad85
______________________________
25 years old - pre-law student
dx with UC 11/2008
On Lialda, Apriso, Colazal, Prednisone
dramatic flucuations - days with 1-3 bms and some days with up to 20
ileorectal anastamosis surgery on 7/13, wound infection in the resulting weeks.
60-70 percent better now - and on the lookout for further approvement on the road to "normalcy."
Posted 12/29/2010 6:45 PM (GMT 0)
I am sorrry that you did not get the pillcam. As far as I know it is the only way to really know for sure what is happening in the small bowel. I am of course glad the the last test came back normal, but knowing what I know now, I would still make the effort to get the pill cam.
Dave
Posted 12/29/2010 9:49 PM (GMT 0)
It can't be the only way to know what's going on...My doctor said most insurance plans don't cover it because it's considered experimental and most people are diagnosed by small bowel follow through, colonoscopy, and ECG.

It really is too bad that most insurance won't cover it though, as it does cut out all of these extra steps.
Posted 12/29/2010 10:17 PM (GMT 0)
Nicotine ameliorates ulcerative colitis and aggravates Crohn's.

You can try nicotine lozenges, starting slow at first if you never were a smoker. If you get worse then you have Crohn's. If you get better then you probably have UC.
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