FRUSTRATED!!!

Hey everyone, first I'd like to say that I hope everyone's doing well. OK, now I need some help. Just called my GIs office to get my report on the IBD Serology 7 test and guess what? She (the lab person) tells me its NORMAL! Why am I frustrated when this is good news? Because I went through the year from you know where when I was diagnosed and now this one little piece of paper is telling me that my bloodwork is "not indicative of Crohns"! I should be excited, and I really am, but why did I suffer through all those tests, the extreme pain, the fistulas, the narrowing, the fevers, the tender mass on my right side and finally end up with a resection to remove part of my small intestine if the Crohn's wasn't there? There was even biopsies to prove it! I'm about at my wits end with this.

Ok, through ranting, now I need some answers. Is this test telling me that there never has been ANY Crohn's or is it telling me there is no ACTIVE Crohn's. Couldn't get the the lab person to tell me this. I have had a very long remission of 13 years but that one year that I suffered through cannot simply be erased. And I know it just hasn't dissappeared...there's no cure! I wanted to ask my GI to put me back on some maintenance meds regardless, but now I'm afraid he won't do it because of these results and I'm gonna be screwed when it decides to hit again. I know from what I've read and that some of you guys have told me that there can be false negatives and false positives, but do the doctors understand that?

How can he tell me I don't have Crohn's when all the earlier tests proved it? If he does I'm liable to go off on him! I have a follow-up on Sept. 22, which is next week so I'm hoping he can explain things to me because I totally disagree with these test results. Guess I'm gonna just have to let things get to their worst as I did the year I was diagnosed for him to see.

Sorry ya'll, I just don't know all I want to know about this test and don't know how the doctor will read into it. If anyone has found a good website that can explain what this test truly tells please provide a link for me. I hate not knowing something like this and have had a hard time finding anything that answers my questions.

Thanks again for listening,
:)Sharon

Sharon, I'm very sorry you are going through this.  I can understand your frustration, as I am now being told that I may not have Crohn's 5 yrs after a Crohn's dx and after 13 years of suffering and it just came out of no where for a reason that I don't know.  I never had a resection, though, so I'm sure you are much more frustrated than me.  From what I'm learning on this site, many people do get wrong results from that test and I think that a lot of drs know that.  Mine said I had UC with like 95% accuracy but I ended up with a Crohn's dx, which may now turn into an IBS dx.  I would ask your dr. what he thinks of the results, as some may put more faith in them than others.  Best of luck...it would be great to not have Crohn's, but horrible to know you went through all of that unnecessarily.  And my biggest problem is that, if they decide my dx was wrong, I will get to go through 8 more yrs of testing like I did prior to my dx.   

Maybe i need to get a second opinion too then

For the record, I pray that the serology 7 test for you was 100% correct and that you don't have this disease. That would mean that you could potentially have a condition that has a cure and not have to endure all that comes with Crohn's. If it were me though, I would have them repeat the test. There is always the possibility that you came up with a false negative. I have had the test done 3 times and the first one came back possibly negative for Crohn's but inconclusive. The second and third came back 99% and 98% positive for it. Just like with any test there is a chance and margin of error.
As for those knocking the serology 7 test, it is pretty accurate and will atleast tell you if you have IBD. If it comes back positive, it is a pretty sure bet that you really do have either UC or Crohn's disease. It was this test that gave me my first hint that this stupid disease was not really in my head and gave my doctors reason to start treating. I can understand why Crohniegurl97 is frustrated. She just wants answers and justification for her pain and sickness. You are not alone and do not need to feel like all that you have gone through in test is for nothing. Reguardless of if you have Crohn's disease or not, you would still have need to go through all the tests to find out what is happening to your body. Has your doctor done a pill cam test on you? The pill cam test is probably the best test in diagnosing active crohn's disease because it sees the entire G.I. tract and is amazing the clarity of the pictures. After finally coming up with a positive on the Serology 7 test, my doctor did a pill cam test on me and finally saw the disease in a part just above the T.I. and T.I. that could not be reached well with a scope. When I was forced by my employer's long term disability company to apply for S.S.D.I., it was the serology 7 test and pill cam results that really backed up the G.I.'s diagnosis. I would have them repeat the test to see if you received a false positive. Again though, I honestly hope and pray that you do not have this disease. I know that it is hard and the emotional pain of not knowing is sometimes worse than the physical, but keep an open mind. Realize that you are not at square one because you have eliminated a whole host of other conditions and diseases with the testing that you have already done. These are tests and procedure that you don't have to do now.

Again, there is always a chance with any test for a false negative. It is by far the most reliable blood test in diagnosing this disease. The most accurate test would be from a biopsy and visual on a scope. How many people have had clean biopsies and then end up with a positive biopsy a year or 2 later? I have had this multiple times. How many people have been diagnosed and then had a clean scope? I have. You would not call biopsies and scopes unreliable because they have false negatives. The best way is just to repeat the test just like you do with a scope. There is a always a margin of error with any test.

Thanks tsitodawg for your response. I would love nothing more than to have a test that would prove with 100% accuracy that I do not have this disease. Unfortunately I have already been diagnosed with biopsies so I'm pretty sure that's not gonna happen. I'm very curious to find out how my GI will read into the test because after reading posts here a lot of them differ on how much they put into believing the results. My last scope a few weeks ago came back clean but I do have to wonder if anything is going on further up that the scope can't get to. Gonna ask about the pill cam when I see him next week.

Han Shan, that has been my main concern all along in worrying about having this test done...if I am in complete remission, would it affect any test or bloodwork? I am just hoping that my GI doesn't decide not to do anything just because everything is looking good at the moment...13 years is a long time to be in remission which has been wonderful for me but as the years tick by I seem to get more worried that I'm gonna end up in the mess that I was in when I was diagnosed. I really need to be on some type of maintenance meds to hopefully keep that from happening. I don't care to have any kind of emergency situation to pop up.

Thanks to everyone for your responses. They really help me see things that maybe I haven't thought of. I want to be prepared to have a major discussion with my GI when I see him and you guys are helping me...I am taking notes with all the questions that are popping up.

:)Sharon

Matthew, that's one of the reasons this has been so frustrating...the Crohns has been proven, so why bother with an expensive test? It's not gonna change the fact that its there regardless of what it says and it's not gonna just go away. All that will happen is that its gonna confuse things for me and the gastro. I have a very competent gastro but he has thrown me for a loop wanting this done.

And maybe you're right and I could still be in a long remission. One can hope!

Thanks,
:)Sharon

I am so sorry you're going through this. I completely understand the frustration. I am there now. I am sending you good thoughts and hope this is resolved soon. My blood work has always come back normal, but after 2 perforations and a small bowel resection I definitely have Crohn's.

Hi all, just wanted to fill you in on my doctor visits this week. Saw my GP on Monday and my GI today and they both told me I wasn't losing my mind and that the serology test isn't always accurate...said unfortunately I really do have Crohns and that I have been really lucky...except for the fact that I do have some IBS going on. My GI stills seems to think that it's not a Crohn's flare because of the clean scope and bloodwork, but is sending me for a SBFT on Monday just to make sure there's nothing going on higher up that he couldn't see with the scope. If that comes back normal then he's going with the IBS for what's going on now but told me that there's a fine line there which makes it hard because of the similar symptoms.

I asked about getting back on maintenance meds if the SBFT comes back normal and he doesn't want to do that. He told me that since I've done so well for so long without any that he would be afraid with the side affects that the meds could cause that it might upset things...still worried about that after hearing Nanners story.

Anyway, thanks everyone for listening. It is such a relief to be able to get on here and talk to people who actually understand what you're talking about and what you're going through. Will let you know how the SBFT comes out. Hopefully I'll get lucky and it'll be normal and I can consider my 13 year remission to be continued.

:)Sharon

Nanners the whole time I was talking to him about maintenance meds I was thinking about you and what happened with you not being on anything for so long. Should I push the issue and tell him I want to be on something? After hearing about you coming out of a 20 year remission like you did, the longer it gets for me the more worried I get.

thanks rlsnights...i'm gonna wait to see what shows up on the SBFT since it is soon and go from there. if it happens to show anything i'll be back on meds anyway and won't have to worry about it.

:)Sharon

Hey crohnniegurl97,

Just wanted to let you know my situation as it is similar in a small way. Since i had my resection in 99' i was never put on maintenance meds - even to this day! Although i was managing well just taking Questran and appeared to be pretty much in remission, the crohns has slowly come back. But i was told for years by doctors that my D and bloating was IBS - never accept this - it's a cop out. Also all of my bloods showed up negative for Crohns/ inflammation. SBFT & Colonoscopies also showed nothing, but i insisted on the Pill Cam test as i knew there was something more than IBS stirring up inside me. Low and behold the Pill Cam showed inflammation in the part of the small intestine that the other tests cannot reach.

So my point is to insist on getting the Pill Cam for a definite conclusion. The SBFT can show alot but as i said, there are some parts of the bowel that this test just cannot reach. As Matthew said, with fistulas etc. it's almost definitely crohns. You didn't go through a year of hell to be told you have IBS. And you should not be med free if you have crohns.

Obviously it would be great if you genuinely don't have it, but either way you need a definite answer from the professionals. Stand up to these guys and don't be fobbed off.
Hopefully they will go with the Pill Cam test.

Keep us updated on your progress, and best of luck

Lila