Diagnosis-Bloodwork results-What does this really mean?

I'm seriously so confused about all of this. I've spoken extensively with my GI doc and his nurse but I still can't really understand if in fact I have a diagnosis of IBD.

The biopsy from the colonoscopy made the diagnosis of "Active chronic proctitis" It also says"The changes are suggestive of, but not diagnostic for idiopathic inflammatory bowel disease. The possibility of an infectious process can not be excluded. clinical-pathologic correlation may be useful"

From what I understood, it was really too early to tell which way this is going to go and that there was not enough evidence on the biopsy to make an UC dx. But according to the GI, my proctitis is most likely a variant of UC. Only time will tell. But then he did some bloodwork and I got those results back. My CBC/diff were perfect. My iron and ferritin levels were great. In fact, my ferritin was better than it normally is. C Reactive protein was completely negative. He also did the antibodies tests-pANCA and ASCA, which were both completely normal-nothing found at all. So after talking to the nurse on the phone, if I understood her correctly, the results of these bloodtests mean that it is more likely now that I will not have IBD and this may be some isolated case of proctitis that I had left untreated for a while.

I'm not comfortable enough to rejoice in any victory yet. I don't know how conclusive these tests are. The nurse just assured me that they didn't even find and low level of things found. There was none detected in the antibodies test as well as the c.reactive protein.

I'll be finished with my 2weeks of cortenema on Sunday night. I told the nurse that I'm down to 1-2 BM's a day and that the blood is much less but still a little bit there, along with some mucous. I never had any diarrhea this entire episode. I started with a very overactive bowel where I was going a bunch of times-even though it was solid. I was mostly concerned with the urgency and blood. This all seemed to stem from a bad stomach virus my entire family got that lasted over 2 week with most of us getting it twice. My stool tests were normal-no parasites, no c.diff, no WBC's or RBC's, etc...

The nurse had the doctor call in another 2 wks of cortenema in case I feel I still need it. Is taking it for 4 wks straight bad? I'm assuming that I'm not completely healed up if I still notice some bright red blood. The mucous doesn't concern me. Should I just take another weeks worth and then if there's no more blood, stop taking it or is this the kind if thing where you really have to finish the meds?

Please give me your honest opinion on whether from my testing results, I still could have IBD. Don't feel like you need to sugar coat things. I can stand the truth.

Thanks for your help

I haven't really gotten a clear answer from him. My stool tests were all normal and my biopsy in not conclusive. If the biopsy is not conclusive and parasites and bacterial infection has been ruled out, is there really anything else that can cause proctitis other than IBD? I just want to know what to expect for the future.

I asked the GI about tapering the cortenemas and he said not to.


But what about the antibody tests? How reliable are they in diagnosing, in conjunction with biopsy results? I'm happy that my biopsy is not as conclusive at I'd like it to be, but its making this whole diagnosis process incredibly frustrating.

Post Edited (chrissy72) : 5/14/2011 5:25:52 PM (GMT-6)

I hate to say it but bloodwork doesn't show too much in regard to your diagnosis. As far as I know, you can have perfectly normal blood work and still have UC. During a flare up, it is usually thought that your immune system ramps up to fight the "infection" and causes your WBC to rise, sed rate to increase and your CRP to possibly be positive. In many cases, such as my own, I never had any of these markers for inflammation.

I have had pretty conclusive biopsies that show UC. The thing is, my GI, who is very honest with me, said that the possibility Chron's has not been 100% eliminated until you have an upper endocopy, pill cam, IBD serology testing, and even then, they can't say with 100% accuracy whether the condition would spread if you had surgery.

My point is, these biopsies, although the most accurate information available, still can not tell you with 100% accuracy what is going on. Blood tests even less so.

I hope you continue to improve and achieve a long remission.

I have read that some STIs can cause proctitis. You can get checked during a pap.

When you mention that you're still seeing some bright red blood with bms-- that could be from a hemhorroid. (So then-- a passing situation rather than a sign of serious inflammation.) It sounds like the Cortenemas are working, and that when you get off them, you'll just have to be wary of any bowel irregularities recurring-- such as urgency, mucus, bleeding, etc.-- which would indicate a need for continuing treatment. I'm wondering, though, why your doctor doesn't seem interested in having you taper off the Cortenemas over a few days rather than stopping them abruptly. As I recall from past use, the flyer that comes in the Cortenema box advises to taper off if one has used them nightly for more than 3 weeks. (That's supposed to prevent any interference to adrenal gland functioning.) I do agree with Sara14 that you have every right and reason to ask your doctor additional questions if you feel that he hasn't provided enough information on your condition to-date. It may be that he thinks "wait-and-see" makes the best sense for the time being, in view of your inconclusive lab test results. Try to stay calm & positive in the meantime. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)