QUESTION ABOUT COLONOSCOPY BIOPSY AND DIFFERING OPINIONS

[barbieAnn]

Hello,

I was just wondering if any of you have had this experience that I am currently going through.

I have been to 4 gastro doctors in the past year. The first doc told me that my biopsy from colonoscopy came back positive for lymphocytic colitis. The Budenoside did not work for me - I was actually having more bowel movements while on it. He then wanted to put me on antibiotics bc "If the budenoside isn't working, then you probably have an infection." I did not take the antibiotics on the assumption that I 'PROBABLY" had an infection. I stopped going to him because I could never get in touch with him and it would take days and days for him to get back to me. I then went to another doc who agreed with the biopsy and tried several drugs, but nothing worked and he pretty much seem to have given up - and so did I - as the waiting times to see him were literally three hours. So this is the issue I'm having now - the last two docs I went to do not agree with the biopsy report and have told me that I do not have LC, it is just a case of IBS. What I don't understand is how you can disregard the biopsy - if the biopsy came back positive, why are they ignoring it? I was told that there wasn't enough sampling taken from different areas - it was just one small area so they did not think that warranted a diagnosis of MC. So I am being treated for IBS - and when they hear my background - that my mother was very ill and husband was fighting cancer, they presume that this is all a case of nerves and this is why I've lost the weight, having incontinence issues, and so on. I am now on anxiety drugs and Bentyl. The Bentyl does not seem to be doing anything - I am still having 3-4 very loose, muddy stools each morning. The anxiety meds don't seem to be doing anything either to be honest. I've been on them for about 5 weeks.

I know there is a fine line between MC and IBS but I've always had a nervous stomach and I've never felt this bad before. I've been eating gluten free, no dairy, sweets, etc. At one point I was doing pretty good - but now I feel like I did back when this all started.

Just wanted to know if anyone experienced this with their docs and why would they dismiss the biopsy results.

Thank you as always for your help -

[tex]

I was told that there wasn't enough sampling taken from different areas - it was just one small area so they did not think that warranted a diagnosis of MC. So I am being treated for IBS - and when they hear my background - that my mother was very ill and husband was fighting cancer, they presume that this is all a case of nerves and this is why I've lost the weight, having incontinence issues, and so on.

Here's my opinion, and it's based on the medical diagnostic criteria for LC:

Whoever told you that shows an ignorance of the diagnostic criteria for IBDs, and a complete lack of understanding of lymphocytic colitis.

All that is required for a diagnosis of LC is a lymphocyte count above 20 lymphocytes per 100 enterocytes on at least a single biopsy sample from anywhere in the colon. It doesn't matter what the other samples might show, or what the average count might be. A single positive biopsy sample is necessary (and sufficient) for a diagnosis of LC.

GI Docs who don't know how to treat MC successfully are always coming up with fabricated excuses for why their treatment advice hasn't worked. In fact that's why they "invented" "IBS", years ago. You cannot have "IBS", because "IBS" doesn't actually exist — it's not a legitimate disease. As I explained in my book, there is no such disease as IBS, despite the fact that doctors somehow manage to "diagnose" it often. "IBS" is the default diagnosis whenever a gastroenterologist cannot make a diagnosis of an actual disease. There are no official tests to detect "IBS". It's a fictitious disease that's invoked when a patient's laboratory markers can not meet the diagnostic criteria of any known disease.

Years ago, gastroenterologists got frustrated and tired of admitting to patients that they didn't have the slightest idea what was wrong with them whenever then couldn't come up with a legitimate diagnosis. So they invented "IBS", a fictitious disease. This was done so many years ago that the current generation of gastroenterologists (who don't otherwise know any better) actually believe that "IBS" is a real disease. Now, whenever a patient's lab markers will not meet the diagnostic criteria of any known disease, the doctor can proudly announce that the patient has "IBS". That sounds so much more professional than admitting that they don't have a clue as to what the actual problem might be. And they feel much better about ripping off the patient and his or her insurance company for an outrageous fee even though they were unable to come up with a legitimate diagnosis.

Many of us started out with a "diagnosis" of "IBS" before our doctors eventually discovered the real problem, namely MC. Now, whenever a doctor is unable to successfully treat an MC patient, they can simply proclaim that the patient also has "IBS". Some gastroenterologists even go so far as to claim that the pathologist was wrong about the original diagnosis, and the patient actually has "IBS", rather than MC. It's not surprising that such doctors are never able to successfully treat MC patients.

When this discussion forum was originally created, a popular joke was:

What's the difference between IBS and MC?

The answer, of course, is "biopsies".

Just wanted to know if anyone experienced this with their docs and why would they dismiss the biopsy results.

Yes, many of us have heard that BS from GI Docs who don't understand MC.

Remember, this is my opinion and every GI Doc out there who doesn't understand MC (and probably many who do) will deny to their dying breath that it is true. But unfortunately it is, because there are no tests for diagnosing "IBS". Every other disease has specific tests so they can be officially diagnosed — but not "IBS".

Tex

[barbieAnn]

Thank you Tex - I thought as much. I just hate taking all these meds with the doc thinking that he's treating something else and not the real problem. It's so frustrating to say the least - I feel like a guinea pig! I feel as though I have to be my own doctor at this point. I was recently referred to a homeopathic doctor who had helped my friend who had Lyme's disease and she was going from doc to doc because with her as well, they had no idea what was wrong with her. They pretty much told her that her problems were all in her head. She eventually found this homeopathic doc who after several tests, found that she had Lyme's disease. She is so feeling so much better now. She said that she treats all kinds of colitis, so I'm going to see what she says.

In the meantime, I will keep up with the elimination diet -

Thank you again Tex -

[Gabes-Apg]

My observation, although you have been gluten free, no sweets etc, you have probably only been on a 'pure' low inflammation eating plan for a few weeks.

It can take months of right eating plan, right supps for inflammation to settle down.
And the right mental and emotional attitude. There is a finite sweet spot that is in the middle of not doing enough and not overthinking and stressing

Remove the mental barrier to taking meds. Some achieve good remission, good lifestyle with long term low dose meds. There is no risk with this if you eat right foods, take right supps, and monitor.

Everyone's mc healing journey is different, there is no right way or wrong way, there is your path.
Breath, relax and hang in there.

[barbieAnn]

Thank you Gabes for your encouragement and support. You are a great help to all of us here!