Hey everyone,
Its been a while since I've posted in here so here is a little bit of my back story....In September 2013 I had a colonoscopy and was diagnosed with Lymphocytic Colitis. I went on Entocort for a short while and had great results and then was able to do a pretty good job maintaining my symptoms with the correct diet. Over time my symptoms started to get pretty bad again and I ended up going to a new doctor because my original doctor made me feel like MC wasn't that big of a deal and pretty much told me to just take immodium or pepto.
My new doctor really seems to know his stuff when it comes to MC and had me pretty excited that I was going to get the help I needed and finally get a good handle on my symptoms. He scheduled me to have a colonoscopy just to make sure that there wasn't anything else going on in my colon.
About 2 weeks before my procedure I was put on a 6 day cycle of prednisone because I had my first ever gout flare up (My primary care doctor put me on the steroids because he knew about my MC and that I couldn't take anti-inflammatory meds). I asked the nurse before my procedure if the steroids I had taken would have any affect on the test results and she said that they shouldn't.
So I had my procedure last Tuesday and then I received an email the next day saying that the lab results from my colonoscopy were available to view on my online medical chart (which I thought was a little strange since the doctor said it would take at least a few days to get them back). I log into my account and the results say my biopsy showed no signs of Lymphocytic Colitis...
I was pretty crushed and extremely confused because I feel like I'm back and the beginning with no answers as to why I have all of these symptoms.
Could the steroids have affected the results of my test? I was kind of under the impression that the test results for LC were pretty cut and dry and now I'm wondering if my first results from 2013 could have been a false positive or something?
My doctor was supposed to call and discuss the results with me but never did. I finally got a letter in the mail yesterday saying my lab results were negative and to call to schedule an appointment to go over other options but they have yet to return my call about scheduling a new appointment so I figured I would hop on here and see if you guys had any input.
Thanks,
Jeff
Confusing new test results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jeff,
Bummer! You need to request a copy of your biopsy report to make sure that multiple biopsies were taken from different areas of the colon. Maybe the MC was missed if this was not the case, since MC tends to be "spotty" (not affect the entire colon at once).
Polly
Bummer! You need to request a copy of your biopsy report to make sure that multiple biopsies were taken from different areas of the colon. Maybe the MC was missed if this was not the case, since MC tends to be "spotty" (not affect the entire colon at once).
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
FINAL DIAGNOSIS:
A. Terminal Ileum, Biopsy:
Small bowel mucosa with no diagnostic alterations; including no
evidence of ileitis.
B. Colon, Biopsy:
Colonic mucosa with no diagnostic alterations, including no
evidence of lymphocytic
colitis.
CLINICAL INFORMATION:
Lymphocytic colitis; diarrhea. A. Rule out ileitis.
GROSS DESCRIPTION:
A. Received in formalin, labeled "Hagedorn, Jeffrey Paul" "A. TI
biopsies", are two, 0.4 and 0.5 cm biopsies, entirely submitted in A1.
B. Received in formalin, labeled "Hagedorn, Jeffrey Paul" "B. Random
biopsies", are twelve, 0.3 to 0.6 cm biopsies, entirely submitted in
B1-B2. (fxr/cmc05)
A. Terminal Ileum, Biopsy:
Small bowel mucosa with no diagnostic alterations; including no
evidence of ileitis.
B. Colon, Biopsy:
Colonic mucosa with no diagnostic alterations, including no
evidence of lymphocytic
colitis.
CLINICAL INFORMATION:
Lymphocytic colitis; diarrhea. A. Rule out ileitis.
GROSS DESCRIPTION:
A. Received in formalin, labeled "Hagedorn, Jeffrey Paul" "A. TI
biopsies", are two, 0.4 and 0.5 cm biopsies, entirely submitted in A1.
B. Received in formalin, labeled "Hagedorn, Jeffrey Paul" "B. Random
biopsies", are twelve, 0.3 to 0.6 cm biopsies, entirely submitted in
B1-B2. (fxr/cmc05)
Jeff,
I agree that Polly is on target with her post. It is almost impossible to diagnose LC if it does not actually exist, but it is very easy to miss a diagnosis when it does exist. And once it exists, it does not just "magically" disappear. The original pathologist could not make such a mistake. It's easy to overlook LC and fail to diagnose it. But when it is diagnosed, that diagnosis is very reliable.
I find it difficult to believe that Prednisone could make the inflammation disappear from biopsy samples, but I don't recall any member here having a colonoscopy exam while taking prednisone, so we don't really know for sure that the prednisone might not have masked the inflammation so that the inflammation could not be found in the biopsy samples. It appears that your doctor took plenty of biopsy samples
A copy of your original (first) pathology report will show whether or not you actually have LC. That may be the most important report in this case.
Tex
I agree that Polly is on target with her post. It is almost impossible to diagnose LC if it does not actually exist, but it is very easy to miss a diagnosis when it does exist. And once it exists, it does not just "magically" disappear. The original pathologist could not make such a mistake. It's easy to overlook LC and fail to diagnose it. But when it is diagnosed, that diagnosis is very reliable.
I find it difficult to believe that Prednisone could make the inflammation disappear from biopsy samples, but I don't recall any member here having a colonoscopy exam while taking prednisone, so we don't really know for sure that the prednisone might not have masked the inflammation so that the inflammation could not be found in the biopsy samples. It appears that your doctor took plenty of biopsy samples
A copy of your original (first) pathology report will show whether or not you actually have LC. That may be the most important report in this case.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Others have posted receiving a negative colonoscopy after being on a restricted diet for a while and healing. As I understand this, it doesn't mean you don't have MC, it just means it is well controlled with diet and the damage has stopped. Or I could be all wet. Someone let me know if this thinking is wrong.had great results and then was able to do a pretty good job maintaining my symptoms with the correct diet.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Theresa,
You are quite correct. But normally it takes roughly 5–10 years for that level of healing to occur. Only about a year and a half has passed in this case. But I suppose it's possible that Jeff might have an exceptional ability to heal.
Tex
You are quite correct. But normally it takes roughly 5–10 years for that level of healing to occur. Only about a year and a half has passed in this case. But I suppose it's possible that Jeff might have an exceptional ability to heal.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for all of the input.
I was able to get an appointment with my doctor yesterday to discuss the test results and he believes that the steroids could have kept the LC from showing in the biopsies. He seems pretty sure that my original diagnosis of LC was correct, especially since both times I have been on steroids my symptoms have gone away. I'm starting on Lialda 1.2 GM tablets 3 times per day. Hopefully along with a clean diet, I'll get my symptoms under control.
I was able to get an appointment with my doctor yesterday to discuss the test results and he believes that the steroids could have kept the LC from showing in the biopsies. He seems pretty sure that my original diagnosis of LC was correct, especially since both times I have been on steroids my symptoms have gone away. I'm starting on Lialda 1.2 GM tablets 3 times per day. Hopefully along with a clean diet, I'll get my symptoms under control.
Jeff,
Thanks for the update. Your doctor seems to be open-minded and he appears to understand the disease better than many. Many GI specialists would have mistakenly claimed that you couldn't have LC if it didn't show up in your biopsies. Your doctor recognizes that it's a lifetime disease, once triggered.
Good luck with your treatment program. You seem to be on the right track.
Tex
Thanks for the update. Your doctor seems to be open-minded and he appears to understand the disease better than many. Many GI specialists would have mistakenly claimed that you couldn't have LC if it didn't show up in your biopsies. Your doctor recognizes that it's a lifetime disease, once triggered.
Good luck with your treatment program. You seem to be on the right track.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.