Hello everyone -
I'm still struggling and have now gone to a 5th gastro doctor to see what their opinion may be. I was wondering if anyone else had a similar experience as I did with this latest visit.
Every doctor that has read my colonoscopy report, questions the diagnosis of LC because they all seem to agree that the first doctor did not take enough samples of the colon. So now this latest doctor visit, she refuses to treat me with any meds until we do a repeat colonoscopy to confirm the original diagnosis, which was a year and a half ago. She wants to know that LC is the true diagnosis and feels that the colonoscopy that was done, was not conclusive. Two other doctors that I went to agreed with this - that there was not enough samples taken. They, however, did not want to put me through another colonoscopy so soon. This new doc also had mentioned a test where you swallow a small camera to check the inside of the stomach.
I wanted to know if anyone has heard this before - that many samples need to be taken in order to confirm a diagnosis. I do not want to have to go through that all over again and be told I have LC, when that was the original diagnosis. I am at a loss as to what to do.
thank you for you help!
Repeat Colonoscopy....
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I'm sure Tex will chime in but colonoscopies are not without risk. 1-1/2 years is pretty current...but still over 1 year.
One of my Texas customers was out of work for about 4 months due to a perforation.
Joan Rivers died from an endoscopy (not a colonoscopy.)
I believe one positive sample is all that is needed for a diagnosis but Tex is better at this so hopefully he will chime in.
I'm assuming you are still having WD? Any blood in stool? Are you looking at the pathology report? (Tex is good with
that stuff).
I was able to get scrip from PCP for cholestyramine as I wanted to try it. He had no problem writing that scrip based
on my comment of loose stool. No discussion of gastro docs or colonoscopies. I'm not sure if he would have done the
same for uceris or entocort.
One of my Texas customers was out of work for about 4 months due to a perforation.
Joan Rivers died from an endoscopy (not a colonoscopy.)
I believe one positive sample is all that is needed for a diagnosis but Tex is better at this so hopefully he will chime in.
I'm assuming you are still having WD? Any blood in stool? Are you looking at the pathology report? (Tex is good with
that stuff).
I was able to get scrip from PCP for cholestyramine as I wanted to try it. He had no problem writing that scrip based
on my comment of loose stool. No discussion of gastro docs or colonoscopies. I'm not sure if he would have done the
same for uceris or entocort.
Hi BarbieAnn,
I agree with Brandy — redundant or unnecessary colonoscopies are to be avoided like the plague. And I will agree that (ideally) your first gastroenterologist should have taken more samples. But if a pathologist examined the sample, or samples that he took, and confirmed that one of them contained the markers of microscopic colitis, then he took plenty samples. One is all you need, if it's positive for MC.
Those other docs are looking for something else (a lot of members have been in that situation, and nothing is ever found), but the fact is, you only need one positive biopsy sample to confirm MC. You might have 99 negative samples, but those are all irrelevant. One positive biopsy sample confirmed by a qualified pathologist is sufficient to prove that you have MC.
Tex
I agree with Brandy — redundant or unnecessary colonoscopies are to be avoided like the plague. And I will agree that (ideally) your first gastroenterologist should have taken more samples. But if a pathologist examined the sample, or samples that he took, and confirmed that one of them contained the markers of microscopic colitis, then he took plenty samples. One is all you need, if it's positive for MC.
Those other docs are looking for something else (a lot of members have been in that situation, and nothing is ever found), but the fact is, you only need one positive biopsy sample to confirm MC. You might have 99 negative samples, but those are all irrelevant. One positive biopsy sample confirmed by a qualified pathologist is sufficient to prove that you have MC.
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.
Tex,
What about the other test - the camera swallowing test?
Would you suggest I see another gastro? lol - I know it's crazy, (the next one would be my 6th try!) but this one left me a bit uneasy. The funny thing is that she would not give me anything in the meantime - (the colonoscopy was scheduled for the end of May!) so I'm supposed to continue to suffer until the test is done. She had said that I could have Crohn's and does not want to prescribe anything until she knows for sure what shes dealing with.
Thank you as always for your input!
What about the other test - the camera swallowing test?
Would you suggest I see another gastro? lol - I know it's crazy, (the next one would be my 6th try!) but this one left me a bit uneasy. The funny thing is that she would not give me anything in the meantime - (the colonoscopy was scheduled for the end of May!) so I'm supposed to continue to suffer until the test is done. She had said that I could have Crohn's and does not want to prescribe anything until she knows for sure what shes dealing with.
Thank you as always for your input!
A swallowed camera test will show parts of your jejunum that a colonoscopy will not reach, but while it's interesting technology, I've never heard of a swallowed camera test (that was done after a colonoscopy) that revealed any new issues. That doesn't mean that the camera test never finds anything, just that it's not very likely.
If she really believes that you might have Chron's, she should be treating you right now, not two or three month's from now. Chron's disease can do a heck of a lot of damage (if untreated) in two or three months. Like so many GI docs, she's just trying to line up as many colonoscopies as she can, because they're the bread and butter money makers for gastgroenterologists. She really doesn't appear to care about how much her patients might suffer — she's mostly interested in lining up profitable tests. The fact that she schedules colonoscopies for two or three months out tells you that she's doing way too many of them. You appear to live in a GI doc desert.
If your intestines had any other diagnosable disease that a colonoscopy could find, some of the many colonoscopies you've already had would have found it by now. Another colonoscopy would be a waste of money (besides being a risk to your health, as Brandy pointed out).
Have you posted your original pathology report somewhere here (from your first colonoscopy), which shows the original diagnosis? I'm talking about the pathologist's original report, not the GI doc's report. If you don't want to post it on a public forum, you can PM me or email me. I should be able to interpret the report and give an opinion on the accuracy of that diagnosis. If you've already posted it somewhere, just point me to it.
Tex
If she really believes that you might have Chron's, she should be treating you right now, not two or three month's from now. Chron's disease can do a heck of a lot of damage (if untreated) in two or three months. Like so many GI docs, she's just trying to line up as many colonoscopies as she can, because they're the bread and butter money makers for gastgroenterologists. She really doesn't appear to care about how much her patients might suffer — she's mostly interested in lining up profitable tests. The fact that she schedules colonoscopies for two or three months out tells you that she's doing way too many of them. You appear to live in a GI doc desert.
If your intestines had any other diagnosable disease that a colonoscopy could find, some of the many colonoscopies you've already had would have found it by now. Another colonoscopy would be a waste of money (besides being a risk to your health, as Brandy pointed out).
Have you posted your original pathology report somewhere here (from your first colonoscopy), which shows the original diagnosis? I'm talking about the pathologist's original report, not the GI doc's report. If you don't want to post it on a public forum, you can PM me or email me. I should be able to interpret the report and give an opinion on the accuracy of that diagnosis. If you've already posted it somewhere, just point me to it.
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.
I had 2 colonoscopies because my Internist was not happy with my local GI, so he referred me to UCLA GI Doctor. He wanted his own biopsies so I agreed. He explained the diagnosis, all the meds and diet choices. He said I didn't need another colonoscopy for 10 years because we know what you got and I have no family history of cancer etc. Only would need one if a big problem came up. I am in touch with him by email if I need him. I check in with him every few months to tell him how I am doing, just to keep me in his radar.
Can you e mail or find a better GI or bigger hospital or university medical center and explain the 6 colonoscopies you already had and get all the path reports to eventually send to them. Maybe they can work from all those reports with one visit and no procedures.
Can you e mail or find a better GI or bigger hospital or university medical center and explain the 6 colonoscopies you already had and get all the path reports to eventually send to them. Maybe they can work from all those reports with one visit and no procedures.
Janie
Hello -
I'm sorry if some of you misunderstood - I have only had one colonoscopy but have seen 5 gastro docs.
Tex - Here is the diagnosis - I am typing it out for you as my scanner is broke - :(
FINAL MICROSCOPIC DIAGNOSIS
A. Colon, Cecum, Polyp:
-LYMPHOCYTIC COLITIS PATTERN OF INJURY. See comment.
Comment: There is no significant increase in sub epithelial collagen. This pattern of injury is compatible with lymphocytic colitis in the appropriate clinical setting. Other disorders such as gluten-sensitivity enteropathy can produce similar changes. No mucosal polyp is identified after multiple levels of sectioning. There is no evidence of dysplasia or malignancy. This case was reviewed in intradepartmental consultation.
GROSS DESCRIPTION:
Received is a formalin filled specimen container labeled with the patients name, medical record number and "cecum polyp". It contains three friable portions of light tan mucosal tissue ranging from 0.4 cm to less than 0.1 cm. The smallest fragment(s) may not survive processing. This speciman is entirely submitted in one cassette.
Let me know if you need more information from the report. Thank you Tex for looking into this for me!
I'm sorry if some of you misunderstood - I have only had one colonoscopy but have seen 5 gastro docs.
Tex - Here is the diagnosis - I am typing it out for you as my scanner is broke - :(
FINAL MICROSCOPIC DIAGNOSIS
A. Colon, Cecum, Polyp:
-LYMPHOCYTIC COLITIS PATTERN OF INJURY. See comment.
Comment: There is no significant increase in sub epithelial collagen. This pattern of injury is compatible with lymphocytic colitis in the appropriate clinical setting. Other disorders such as gluten-sensitivity enteropathy can produce similar changes. No mucosal polyp is identified after multiple levels of sectioning. There is no evidence of dysplasia or malignancy. This case was reviewed in intradepartmental consultation.
GROSS DESCRIPTION:
Received is a formalin filled specimen container labeled with the patients name, medical record number and "cecum polyp". It contains three friable portions of light tan mucosal tissue ranging from 0.4 cm to less than 0.1 cm. The smallest fragment(s) may not survive processing. This speciman is entirely submitted in one cassette.
Let me know if you need more information from the report. Thank you Tex for looking into this for me!
BarbieAnn,
I need to see his "findings", that is I need to see where he described what he saw under the microscope when he examined each and every biopsy sample after it was prepared and mounted in a slide for examination. In his findings, he will say something like, "normal architecture", or "normal crypts", or "lymphocytic infiltration", or X number of lymphocytes per high-power field", for example.
Tex
I need to see his "findings", that is I need to see where he described what he saw under the microscope when he examined each and every biopsy sample after it was prepared and mounted in a slide for examination. In his findings, he will say something like, "normal architecture", or "normal crypts", or "lymphocytic infiltration", or X number of lymphocytes per high-power field", for example.
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.
FINDINGS:
Anal Canal: Normal
Rectum: Second degree hemorrhoids
Sigmoid Colon: Normal
Descending: Normal
Splenic Flexure: Normal
Transverse Colon: Normal
Hepatic Flexure: Normal
Ascending Colon: Normal
Cecum: Diminutive Polyp of size 3 mm, Polypectomy done using biopsy forceps
Heocecal Valve: Normal
Heum: Not seen
Impression: Benign neoplasm of cecum - D12.0
Second degree Hemorrhoids
PLAN: Wait for pathology report
***Now that I'm reading this - I'm really confused! I see nothing about lymphocytes -
Anal Canal: Normal
Rectum: Second degree hemorrhoids
Sigmoid Colon: Normal
Descending: Normal
Splenic Flexure: Normal
Transverse Colon: Normal
Hepatic Flexure: Normal
Ascending Colon: Normal
Cecum: Diminutive Polyp of size 3 mm, Polypectomy done using biopsy forceps
Heocecal Valve: Normal
Heum: Not seen
Impression: Benign neoplasm of cecum - D12.0
Second degree Hemorrhoids
PLAN: Wait for pathology report
***Now that I'm reading this - I'm really confused! I see nothing about lymphocytes -
Are you sure this is the pathologist's report? It even says "PLAN: Wait for pathology report." This sounds like the gastroenterologist's operative report for the procedure, rather than the pathologist's report. This is the report that the gastroenterologist files when he or she completes a colonoscopy.
The actual pathologist's report (which will be written after the pathologist examines the biopsy samples) should describe in detail what the samples showed when he or she examined them under the microscope. And it will be signed by the pathologist, rather than the gastroenterologist.
Tex
The actual pathologist's report (which will be written after the pathologist examines the biopsy samples) should describe in detail what the samples showed when he or she examined them under the microscope. And it will be signed by the pathologist, rather than the gastroenterologist.
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.
No wonder all the other gastroentrologists are requesting another colonoscopy. There's no evidence in that report, only conclusions. The report claims a "lymphocytic colitis pattern of injury", but doesn't provide any evidence to support that finding. The comment "There is no significant increase in sub epithelial collagen." rules out collagenous colitis. But I don't see anything there that supports the claim of "lymphocytic colitis pattern of injury". Your colon may indeed have a "lymphocytic colitis pattern of injury", but that report wouldn't convince me that you have LC, because he doesn't support his claim with evidence found during the examination of the biopsy samples. It's standard practice for pathologists to provide a lymphocyte count per 100 enterocytes (in the sample), or per high-power field (through the microscope), to substantiate their final diagnosis. i don't understand why he failed to do that. It really hurts his credibility.
Tex
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.
So in your opinion, should I go through another colonoscopy? I was so sick after the last one. This is so frustrating. These doctors put you through these tests and then the pathologists don't give enough information to give a definitive diagnosis. The other doctors that I have been seeing, all point fingers at the doctor who performed the colonoscopy. I still don't understand - is it the pathologist who is at fault? Should I call the first doc up to see if there are any additional pathology reports that I was not given? At this point, what would you suggest?