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crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/13/2010 11:43 AM (GMT -7)   
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

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 9/13/2010 12:28 PM (GMT -7)   
This particular test is only an indicator, it does not offer 100% accuracy. Your doctor will need to look at the whole picture (history, blood tests for inflammatory markers, etc.).

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/13/2010 12:32 PM (GMT -7)   

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.   


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/13/2010 12:54 PM (GMT -7)   
Dear, the test is flawed. All of the GIs I've had that are worth their weight in salt say it's very unreliable and should only be used to *help*, never to diagnose. My test was negative too, but according to my past history and biopsies from c-scopes, I definitely have Crohn's.

jrg478
New Member


Date Joined Sep 2010
Total Posts : 6
   Posted 9/13/2010 1:06 PM (GMT -7)   
Maybe i need to get a second opinion too then

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/13/2010 7:21 PM (GMT -7)   
Thanks everyone for your responses. I am so ready for next week so I can actually sit down and talk to my GI about this. I don't know how he can say that the test is accurate when he's the one that found everything and had the surgery done. It's not like I've changed doctors or anything and he can doubt what anyone else said. All I can do is play the waiting game until a major flare hits and we wind up back at square one, which is what I was hoping to avoid this time around...and that's sure to happen sooner or later, especially with me on no meds for the Crohn's. I'm very curious as to what he's gonna have to say.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 9/14/2010 12:26 PM (GMT -7)   
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.

jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 9/14/2010 12:38 PM (GMT -7)   
Unfortunately, that test is not reliable and those were the exact words from my doctor at Mayo. My results were interepreted as a non-existent chance to develop UC or CD throughout my lifetime. While many doctors don't believe my diagnosis is accurate - there are too many indicators to not diagnose me with one or another at this point - at least for the sake of getting medicines approved by insurance.
JAS


Currently taking: started Humira 07.13.10
Recently tried 6MP and developed pancreatitis
Allergic to mesalamines
I miss Remicade.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 9/14/2010 12:49 PM (GMT -7)   
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.

Laughing Willow
Regular Member


Date Joined Oct 2008
Total Posts : 69
   Posted 9/14/2010 3:30 PM (GMT -7)   
Just out of curiosity here, if a person is in complete remission, then wouldn't it be possible that no tests of any sort would indicate the presence of the disease? My GI doc says that looking at my bloodwork, one would never guess that I have the disease. Of course, I will always have this disease and need to treat it accordingly. It could rear its ugly head again at any time.
36 y/o male

CD diagnosed in February 2008 || Remicade treatments April 2008-present || Modified SCD diet July 2009-present || Remission from July 2008-present

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/14/2010 4:10 PM (GMT -7)   
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
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/14/2010 4:35 PM (GMT -7)   
 
 
           I'm sorry, but if you have had fistulas, the odds are you have Crohn's regardless of one negative test. A competent Gastro will look at all factors, including history.
           On the up side, maybe you are heading into remission? turn
 
 
        Sincerely,
       Matthew
 
 

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/14/2010 5:21 PM (GMT -7)   
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

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/15/2010 4:42 PM (GMT -7)   
Its the one place every crohnie wants to be, remission.
I hope this is a sign for you!
*****
For myself? No intestinal signs in over a week. But the torture boots of the IBD-related arthritis are on.. My foot is being crushed! Oh well, and oops, i almost hijacked your thread. Apologies..

Sincerely,
Matthew

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 9/18/2010 10:23 AM (GMT -7)   
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.

rlsnights
Regular Member


Date Joined Apr 2006
Total Posts : 449
   Posted 9/18/2010 5:46 PM (GMT -7)   
The serology testing is only helpful when it is *positive*. It is reasonably accurate *when it is positive*. But if it is negative it doesn't mean anything. It does *not* mean you don't have IBD.

The gold standard for diagnosing IBD is biopsies - not serology tests.

Since you have this, perhaps you can leave the question of diagnosis behind you and move on to the question of whether long term treatment is appropriate in your situation.

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/22/2010 11:45 AM (GMT -7)   
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
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/22/2010 12:16 PM (GMT -7)   
Well crohnniegurl97 I respectfully disagree with your doc. I had that 20 year remission, but the damage was occuring for me without me even knowing it. I really think even something mild like Asacol or Pentasa should be used. I have been successfully maintained for the past 5 years with only Asacol. Its one of the mildest meds out there. But I think your doc is wrong in not at least putting you on one of these milder meds. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/22/2010 12:43 PM (GMT -7)   
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.

rlsnights
Regular Member


Date Joined Apr 2006
Total Posts : 449
   Posted 9/22/2010 3:59 PM (GMT -7)   
Or you could ask for a 2nd opinion consultation.

Since the SBFT is real soon you could wait for those results before asking for a 2nd opinion.
son now 14 1/2, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/22/2010 4:25 PM (GMT -7)   
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

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 9/22/2010 7:12 PM (GMT -7)   

I had the exact same result as you from the same test. My GI apologized for making me spend the money on the test and said it is only 60% accurate. The pill cam came back all too clear that I have this DD.

Please do not allow this inaccurate test to shape your treatment or approach. Knowing what I know now, if a doc was going to tell me I did not have CD after what you went through, based on this crappy test, I would for sure get a new doc.

I am hoping you do not have CD< but unfortunately this test can not tell you that

David

 


LiLa
Regular Member


Date Joined Nov 2007
Total Posts : 106
   Posted 9/23/2010 3:34 AM (GMT -7)   
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

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 9/23/2010 9:16 AM (GMT -7)   
Thanks David & LiLa. The doctor told me yesterday that I definitely have Crohn's and he's not doubting that...although with the test he did "I" was the one that was doubting him because I didn't understand why he would do it unless he had concerns that the diagnosis was wrong. Now we're just in the process of determining if there's a flare going on.

Lila, I agree with you, I think the IBS can be a cop out if they can't immediately see signs of anything going on. I can understand a colonoscopy showing nothing because it doesn't reach that far...what I don't understand is how bloodwork can show normal if something is going on? I would think that would be one of the first things that would be abnormal.

Anyway, I go for the SBFT on Monday. I thought it would show everything, now I'm a little concerned about it missing something as well after hearing your story. I've never had the pill cam before, but if the SBFT comes back normal I think I will tell him I want that done. That way I can be a little more sure when he says there's nothing going on because I will have covered pretty much everything.

:)Sharon
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