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Ulcerative Colitis
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Posted 12/7/2010 10:10 PM (GMT 0)

Hey guys,

I had surgery (ileorectal anastomosis) about 4 months ago and have been recorvering (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 Chron'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

3/2010 - colonoscopy - dx with UC

I think I even had blood testing before this surgery to double check and ensure UC before the surgery - I'll have to dig through my records.

I think this was 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 was not needed - I just did it out of curiosity, but now this doctor is recommending a colonoscopy to confirm whether it is UC or Chron'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 Chrons, 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 Chron'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."

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."

Posted 12/7/2010 10:34 PM (GMT 0)
That sounds like a very frustrating situation. Honestly, I think you might get a better response on the Ostomy or Chrons forums. I can't really tell you much about your situation, I don't have experience in that area but I can tell you that I've seen people here mention that the prometheus tests are not that accurate.

I don't know what you should do about the colonoscopy. Are you having symptoms that are making you need to know whether it is UC or Chrons? If you're healthy and feeling well, unless there were a reason, I don't see why they would be wanting to find this information. Why would he do the IBD blood test after surgery? This should have been confirmed before surgery.

One thing I can tell you is that you wouldn't be the first person to have surgery for UC and find out you have Chrons after.

I hope this is not the case & I hope you're healing well from surgery.

Posted 12/7/2010 10:43 PM (GMT 0)
I don't understand why your doc would run this test post surgery if you aren't experiencing symptoms (like chronic pouchitis - I know you have an IRA but I don't know what the right word is). My daughter had a postive panca and a boarderline postive igg asca. My husband is an academic who studies stats and he's been trying to explain to me how reliable or unreliable the test it. I don't really understand it but basically I know that many GIs (including those at Mayo) won't run the test and think it's useless. What was the pathology on your colon?
I really would not worry about this unless there's reason to suspect you have CD (symptoms). Otherwise, enjoy your recovery post UC. I personally also wouldn't do the scope unless I had symptoms - it sounds like your GI's a little backwards on this one.
Posted 12/7/2010 10:54 PM (GMT 0)
I'll just add that one of the seven (or six, depending on how long ago you did the Prometheus panel) tests for ASCA Iga and Igg antibodies. So, if you tested negatively then and are showing positives now, I'm not sure how you would interpret conflicting data.

A positive ASCA can indicate small bowel Crohn's. Have you ever had any systems in your small intestines that you know of?
Posted 12/7/2010 10:57 PM (GMT 0)
Killcolitis - there was no recommendation to run this test. I requested it myself because I'm paranoid I'll end up being one of those cases with Chrons instead of UC! But none of my past tests (colonoscopies, biopsies, flex sig) indicate anything other than UC. I even had a CT scan done earlier this year that indicated UC.

I don't have any blood loss since I had my surgery. I still have frequent BMs (about 5-6 a day now, down from 8-10 a day in the first 2 months post surgery), and I have varying urgency and diahrrea sometimes, although stools are solid most of the times. I attribute the varying urgency and diahrrea to the inflammation in the rectum and the fact that it takes up to a year for the gut to normalize post-surgery (as nurses have told me).

So maybe I don't have anything to worry about. I'm not perfect, but I'm almost 90 percent better than pre-surgery and I notice improvement as each month goes by, although I still have some issues.
Posted 12/7/2010 11:07 PM (GMT 0)
I really would not stress about it in that case. Like I mentioned, many GIs refuse to run this test because it's unreliable. The fact is that you're improving (5-6 bms is great so soon after surgery isn't it)? I'd just enjoy your recovery and your health as much as possible.
Posted 12/7/2010 11:13 PM (GMT 0)
Also, interestingly, the ASCA test looks at antibodies your body produces to things things including various forms of fungus (ie. Candida Albicans). There's a theory out there that some people's IBD is caused by a fungal infection. We felt our daughter had a fungal issue in relation to her UC which of course was dismissed by her GIs. She recently had positive stool tests to some types of candida and is now on an antifungal med. Is it a co incidence that she had antibodies against candida which showed up on this test if she in fact has a fungal infection? It is astonishing to me that they do these tests and then don't bother to even interpret the underlying issues at all! So, if you're really worried about the positive ASCA maybe you could pursue the fungal theory more (though if I were you I just wouldn't worry about it really).
Posted 12/8/2010 12:45 AM (GMT 0)
Levi - is there any other test to substantiate/verify small bowel chrons?  I've never had any test specifically for the small bowel, that I'm aware of, other than a CT scan which should have detected something like that.

KillColitis - I had not thought of that.  I do have allergies to fungus - mold and mildew - that I was diagnosed with a long time ago so it is possible my UC could be fungal-related.

Thanks for the info!

Posted 12/8/2010 3:26 PM (GMT 0)
I checked with some on the Chrons forum and they said a pill cam test (for small intestine examination) would be the best method to determine Chrons. I'm still perplexed at these results - I had a CT scan of my small intestine last January and everything was clear, but this would be a better test than another colonoscopy.

Since I already have allergies to fungus, I think that a fungal infection may have caused by UC and be leading to these divergent blood results.

I guess I shouldn't be concerned as I've drastically improved since the surgery (not perfect, but 80-90 percent better), although it is frustrating when you get a result that contradicts everything you've been told for 2 years.
Posted 12/8/2010 3:48 PM (GMT 0)
Sorry, I didn't see your reply, must have fallen far. Yeah, if you are really worried about it I would get a pill test for sure. But also, keep in mind that these blood tests are just statistics. A good portion of people with small bowel Crohn's don't even test ASCA positive. You can do research on these predictive tests and find that lots of researchers don't give them any credence. The percentages of people who have the particular antibodies and the correlation percentages to each diagnosed disease is pretty low in my opinion, so I kind of agree with the critical articles you can find about these tests.

When I tested positive for anti-Cbir 1 antibodies I called the Prometheus lab in California and talked with a researcher for a little bit. She basically told me I either have X or it could be caused by a urinary tract infect (this particular antibody showing up.) My GI told me this was complete hogwash and that I may just happen to have that antibody.
Posted 12/8/2010 5:35 PM (GMT 0)
Prometheus tests are unreliable. When I had asked for it a couple years back, my GI said that it wouldn't be helpful and I'd be better off getting an upper endoscopy (which I did with the pill cam) to check for Crohn's.
Posted 12/29/2010 2:58 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 inflammation, 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."
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