Anyone with Normal Biopsies?

[xJillx]

How many of you have or have had normal biopsy results?


I had a colonoscopy in September, and my GI emailed me my biopsy results today: “entirely normal, no sign of Crohn’s or IBD.” Biopsies in July showed “acute colitis”, but all biopsy results prior to this had been normal, as well. Without positive biopsies, my GI says “let’s not put any labels to this” even though I was diagnosed by my former GI. I am very frustrated.

 

[archie]

My first colonoscopy indicated crohns due to the inflammed ileum, I never asked for my biopsy results then unfortunately. I then had surgery and the pathology report came back conclusive of crohns 100%. I then had a colonoscopy after my resection which showed up ulcers and mild inflammation at the surgery site. These biopsies came back normal. This probably isn't that much help to you as I'm not sure what the results were from the 1st colonoscopy sorry. I am sorry for your frustration, are you having symptoms at the moment?

 

[D Bergy]

My biopsies were all normal, but the scope showed spots of inflammation.

But biopsies are dependent on finding what they are testing for, so if it is something other than what they are testing for, you get no results.

In my case it was Mycoplasma Pneumonia, but they did not test for that. An antibiotic reduced symptoms by 80% and I am working on the remaining 20% which may or may not be remaining Mycoplasma.

It is not always Crohn's, but Crohn's is naturally the first thing you look for, if you have a history of it.

Dan

 

[archie]

I'm just interested but what is mycoplasma pneumonia?

It's ok i've googled it I was just interested as I have a really bad chest infection / pneumonia at the minute and wanted to see if there was a correlation.

 

[D Bergy]

There can be a correlation, as in immune compromised people the infection can move into the digestive tract, and it causes a lot of problems.

Lots of pain in my case, and weight loss, just like a bad Crohn's flare.

Luckily it moved into my lungs or it would have been very difficult to diagnose otherwise.

Dan

 

[xJillx]

@archie - Yes, I am very symptomatic. To be honest, I was floored my colonoscopy looked so clear (minus "very mild" inflammation in my rectum) being that only a few weeks before I had my worst flare ever. I was in and out of the bathroom about 15+ times a day with lots of mucus and blood. And I still haven't been right ever since. About 2-3 days a week I experience some bad days where I am in pain, frequent loose BM's, mucus and blood.

@D Bergy - You make a good point. I am going to suggest testing for other things, though Crohn's is the most likely cause. But I figure if we test for other things, perhaps she can more confidently say Crohn's by process of elimination. Any ideas of what else I could possible test for based on my symptoms?

 

[D Bergy]

Other than the Mycoplasma group of bacteria, I would have them test for Actinobaccillus.

It is unlikely that it is either, but once the usual suspects are eliminated you have to test for the unusual.

I have had H-Pylori give me symptoms also, but they have probably already tested for that.

Dan

 

[David]

For more forehead smacking fun, give this a read: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1374845/

 

[flowergirl]

i've read quite a few things that say it really depends what lab your biopsies go to and what technician reads them.

all my biopsies came back negative for crohns. my last one was nonspecific chronic inflammation. of course that was right where my FISTULA starts.

 

[xJillx]

@D Bergy - I will be asked about Actinobaccillus and H-Pylori. I have never been tested for anything other than Crohn's and Celiac.

@David & flowergirl - Good point about the possible discrepancy among clinics & techs. I will mention this to my GI, as well.

Thank you for the replies.

 

[D Bergy]

Lab tests are often unreliable, and I do not think most people realize they are not 100% accurate.

They rarely provide a false positive, but can provide a false negative.

The tests vary in accuracy depending what you are testing for, and the lab doing the testing.

The rule of thumb is that a lab test can only conclusively prove you have something, but not that you do not have it. At least not with 100% accuracy.

Dan

 

[chrisnsteph1022]

I've had completely normal scopes/biopsies while symptomatic. Those periods of time were chalked up to IBS. I've had 3 scopes that showed clear Crohn's and that was attributed to a flare. While in remission, my GI said my colon looked completely healthy, not even any scar tissue.

 

[happy]

xJillx,
Sorry to hear that you are having a frustrating time. I too wish that it was much easier to get a full diagnosis.

I was awake for most of my first colonoscopy in Sept. 2010. At the time I had 20-30 ulcers in my terminal ileum, which of course I saw on the monitor in front of me. I watched while he took biopsies-- not as easy as one might think. He stated afterward that it is hard to biopsy the right part of the bowel when there are skip lesions (as in my case). My biopsies were all normal. The doctor still maintained that I likely had Crohn's and told my husband this as well (a health professional).

After this they changed their electronic medical record system and the colonoscopy report could not be retrieved anymore. Now my records look as though I had a ''normal colonoscopy" rather than a 'scope with lesions and 'normal biopsies'. This has caused problems with the GI specialist that I was referred to after my first scope.

So xJillx, I share your frustration.

 

[Cat-a-Tonic]

Although I'm not fully diagnosed, my GI says I have IBD (he thinks Crohn's or microscopic colitis). I've had a c-scope and an upper endoscopy, and many biopsies were taken during both scopes. Every single one of them came back normal. So for what it's worth, I've got probable IBD but have only ever had normal biopsies.

 

[Farran7]

My son's initial IBD panel and pathology were all negative even though he had inflammation and ulcers present during his scope....that GI doctor wanted him on Remicade at age 4....but we went for a2nd opinion and that GI said no to treatment....six years later....he now tester positive for one marker on the panel and his pathology was positive for Crohn's disease......go figure.

 

[tobyjug]

my last biopsy came back as "inconclusive" even though like others there were clear signs of ulcers. To be fair they had put me on the medication 3 months prior to doing the test. GI says that this is not uncommon. They had seen enough from the pillcam plus the CRP and other tests to say it was crohns.

 

[Becca1991]

In Feburary 2009 i had my first colonoscopy and it showed small ulcers throughtout the colon was put down to the prep as the biospies came back normal but in October 2009 i had another colonoscopy after a CT scan picked up mild wall thickening increased mucosa(sp) of the terminal ileum and the biospies said just mild Crohns Disease

 

[xJillx]

Thanks to all who have responded.

Well, after a phone conversation, I have learned my GI is retracting my Crohn's diagnosis based on the normal biopsies and other normal tests. My one and only test that looked like Crohn's was my first colonoscopy back in 2010, and my GI believes I could have had an infection at that time which has now left me with postinfectious IBS.

I am not too confident in this theory, but I have no choice but to see how this plays out. As per my GI, I am stopping Lialda and will be taking a course of antibiotics.

Here goes nothing...

 

[DustyKat]

Hey Jill,

Thinking about you hun and hoping all goes well for you with the change of treatment...:goodluck:

I am with you Jill in not being totally convinced with the new theory. I am still concerned about the bleeding you have had in the past, it doesn't happen with IBS and they still haven't been able to explain it away if it isn't IBD. You would have seen in your other thread about Matt and his pathology results so that certainly doesn't convince me either. The GI that diagnosed Matt only saw two small ulcers and that was it, his inflammation was mild to very mild and I know full well from reading other peoples experiences that under other circumstances he could very easily have been given a no diagnosis.

Dusty. :heart:

 

[porter89xxx]

Hi jill im right there with you, i to am having a hard time getting a diagnoses i feel as if they are throwing the ball to me treating me for crohns and then testing me whilst on treatment which is gonna show nothing and then take the ball away and say u have dysfunctional bowel. I have had a small bowel follow through that showed clear ulcers and thick inflammation which my gi says is the only test that is very clear to say i have crohns. I have has a scope also had inflammation there but biopsy results were normal and a mri scan in jan that demonstrated thickening in the terminal ileum which was also played down to nothing when looked again. I am so fed up of going through the motions i just want to know whats wrong with me i too have blood and mucus on occasions and know this is not ibs but somthing much more sinister, we know our own bodies and its a shame that drs think they have the right to tell us nothing is wrong. I am being tested also for addisons disease as when i try to wean off steriods my symptoms come back and i end up in hospital with severe temps and pain and fainting and collapsing.. Maybe you could look this up.

 

[xJillx]

@Dusty - I have had Matt in mind through this whole ordeal. I remember you saying his biopsies have been normal. I did ask my GI if she had patients with normal biopsies, and she said yes. But she said the fact that all of my many tests have been normal except for my first colonoscopy is something to consider. Granted, I have been taking Lialda. So, wouldn't that just mean it has been working? I guess we'll soon find out.

@Porter - I am so sorry to hear you are having such difficulty getting a diagnosis. If your tests have shown ulcers, inflammation, and thickening, it sounds like Crohn's to me. I sure hope you get some answers soon.