Hi
I did receive my biopsy report today from my first colonscopy!
2 biopsies taken.
1 in ileum: negative inflammation. all normal.
1 in sigmoid colon: all normall.
This is impossible!
I had calprotectin test of 107after 3 weeks disease onset.. GI told me this is indication of IBD.
Budesonide gets my stools more formed.
after tapering down or stopping..diarea return in 1 or 2 days!
what has happend?
sigmoid all normall.. OK this is possible!
But ileum normal???
I did get campylobacter jejuni 4 months ago..
2 weeks later campylobacter was GONE in stool tests..
But calprotectin showed inflammation..
since then my bowels are f**ked.
Now my personal doctor did believe the GI specialist and his biopsy and they are in some dis-believe.
GI told me that budesonide works for me as a placebo!! I can tell u this is not placebo!
It gave me 50 - 60% of my life back!
The GI told me to take another calprotectin test and it will show negative too!
Well.. he is gonna be WRONG.
I will taper down to 6mg tomorrow.. next day after that to 3mg.. and then stop entocort.
Then saterday and sunday will be explosive diarea day.. and monday I will make the stool sample for calprotectin test!
Is this a good idea to prove him wrong?
Or should I do a whole week without entocort first?
The longer without entocort the higher my calprotectin value will be in my believe!
But I dont think i can handle it.. so i will probally do it monday.
Is my MC active in the small intestine because campylobacter is primairy located in jejunum?
and so the immune reaction is mostly active in jejunum?
I just dont get it that the ileum was negative.
greets ken
I cant believe it !!
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Hi Ken,
As Jari and Brandy pointed out, your doctor did not take enough biopsy samples. MC is very easy to miss because it occurs in scattered patches in the intestines. It cannot be found everywhere. If only a few samples are taken, and they are taken in the wrong locations, the disease will be completely missed. He should have taken at least 3 or 4 in each section of the colon plus the ileum, for a total of at least 10 to 15 samples, or more.
But some pathologists do not recognize MC when they see it, because they have only heard of the most common types, LC and CC. Can you obtain a copy of the pathology report? It may show that you have MC, but your pathologist missed it.
You are correct — if you did not have an IBD, the budesonide would not have helped. The doctor who told you that a bacterial imbalance (or an bacterial infection) would be helped by budesonide doesn't know what he's talking about. A corticosteroid will have no effect on an infection.
The other thing that could have been missed is mastocytic enterocolitis. The pathologist would need to stain the biopsy sample slides with a special tryptase-based stain in order to make it easy to count mast cells. If you have more than 20 mast cells per high power field under the microscope (in other words, more than 20 mast cells per 100 enterocytes), then you have mastocytic enterocolitis (which is another type of MC).
Tex
As Jari and Brandy pointed out, your doctor did not take enough biopsy samples. MC is very easy to miss because it occurs in scattered patches in the intestines. It cannot be found everywhere. If only a few samples are taken, and they are taken in the wrong locations, the disease will be completely missed. He should have taken at least 3 or 4 in each section of the colon plus the ileum, for a total of at least 10 to 15 samples, or more.
But some pathologists do not recognize MC when they see it, because they have only heard of the most common types, LC and CC. Can you obtain a copy of the pathology report? It may show that you have MC, but your pathologist missed it.
You are correct — if you did not have an IBD, the budesonide would not have helped. The doctor who told you that a bacterial imbalance (or an bacterial infection) would be helped by budesonide doesn't know what he's talking about. A corticosteroid will have no effect on an infection.
The other thing that could have been missed is mastocytic enterocolitis. The pathologist would need to stain the biopsy sample slides with a special tryptase-based stain in order to make it easy to count mast cells. If you have more than 20 mast cells per high power field under the microscope (in other words, more than 20 mast cells per 100 enterocytes), then you have mastocytic enterocolitis (which is another type of 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.
this is my report.
Its in dutch.. so u could translate it with google?
the most words are medical term and will look like the english form i guess.
Yes.. how long is the gi tract?? 25 meters?
He took 2mm of 25 meters biopsy.
The chance that its being missed is huge.
I told the same thing!
they let me do another calprotectin test and he is sure it will come negative back!
well.. Im sure it will be over +100 or more!
damn, im really pissed off.
U guys are the only people that really understand this problem.
still.. i feel very alone in this disease at home.
ps: does BONE BROTH help us?
Im making some.
Hi Ken,
Based on what the pathology report says, it does indeed appear that you do not have LC. Regarding the sample from the colon, the report says (if my translation is correct), "In the lamina propria, we see a normocellulair (normal number of cells) of mononucleair inflammatory infiltrate." If the report had noted an above normal level of infiltrated mononuclear cells, but not enough to be diagnostic of LC, that could have been a marker of paucicellular LC. But "normal level" means normal level, so that sample showed no signs of LC.
And of course the report shows normal architecture and normal lymphocyte count for the cells in the sample from the ileum. So based on what it says, the report conclusion (no MC) appears to be correct.
However, there is a glaring omission in the report. Unless I overlooked it, there is absolutely no mention of the pathologist even bothering to measure the thickness of the collagen bands in the lamina propria of the colon. It's necessary to do that in order to rule out CC (collagenous colitis). Of course normally, if the collagen bands are sufficiently thickened to be diagnostic of CC, there will also be some degree of increased lymphocytic infiltration, which is not the case with your sample. However, it is possible to have thickened collagen bands without an increase in the lymphocyte count. That's not common, but it's possible.
So your pathologist did not rule out CC, because she or he never even checked to see if it was present. And as I mentioned in another post, they did not check for an increase in the number of mast cells, which would be diagnostic of mastocytic enterocolitis. I would be upset too, because that is very poor (lazy) work on the part of the pathologist. And the same can be said of the doctor doing the colonoscopy, because he or she should have taken many more samples.
Yes, many members here have found bone broth to be very helpful for healing.
Tex
Based on what the pathology report says, it does indeed appear that you do not have LC. Regarding the sample from the colon, the report says (if my translation is correct), "In the lamina propria, we see a normocellulair (normal number of cells) of mononucleair inflammatory infiltrate." If the report had noted an above normal level of infiltrated mononuclear cells, but not enough to be diagnostic of LC, that could have been a marker of paucicellular LC. But "normal level" means normal level, so that sample showed no signs of LC.
And of course the report shows normal architecture and normal lymphocyte count for the cells in the sample from the ileum. So based on what it says, the report conclusion (no MC) appears to be correct.
However, there is a glaring omission in the report. Unless I overlooked it, there is absolutely no mention of the pathologist even bothering to measure the thickness of the collagen bands in the lamina propria of the colon. It's necessary to do that in order to rule out CC (collagenous colitis). Of course normally, if the collagen bands are sufficiently thickened to be diagnostic of CC, there will also be some degree of increased lymphocytic infiltration, which is not the case with your sample. However, it is possible to have thickened collagen bands without an increase in the lymphocyte count. That's not common, but it's possible.
So your pathologist did not rule out CC, because she or he never even checked to see if it was present. And as I mentioned in another post, they did not check for an increase in the number of mast cells, which would be diagnostic of mastocytic enterocolitis. I would be upset too, because that is very poor (lazy) work on the part of the pathologist. And the same can be said of the doctor doing the colonoscopy, because he or she should have taken many more samples.
Yes, many members here have found bone broth to be very helpful for healing.
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.
thx tex!
yes, your words are very correct.
the fact that he looked over CC.. I can except.
Bcoz like u say and as i read everywhere.. if CC is present.. then lymphocyte will also be present in 99% of the cases.
The only thing i really hate is that he only took 2 samples!
I told him before the colonscopy..
I said:
U will see notting in there bcoz I believe it will be microscopic.
If u dont see anything.. pls take a lot bopsies from each colon part and ileum.
so this means 6 samples minimum!
and if he would take 2 sample in each part.. it would count 12 like most GI's do in the states.
I am from belgium and they are not so smart inhere.
My mother doesnt believe me if I say that u guys know more of this disease then doctors.
even I know some things better then these guys. GGRRRRRRR.
well.. I tapered of entocort.
tomorrow 3mg.. then back to 0mg a day.
then the inflammation rises again and i will shi* in the calprotectin potty.
How long should i wait to do the calprotectin??
as long as I can do without entocort??
I wonna smack the calprotectin value in there face!!
yes, your words are very correct.
the fact that he looked over CC.. I can except.
Bcoz like u say and as i read everywhere.. if CC is present.. then lymphocyte will also be present in 99% of the cases.
The only thing i really hate is that he only took 2 samples!
I told him before the colonscopy..
I said:
U will see notting in there bcoz I believe it will be microscopic.
If u dont see anything.. pls take a lot bopsies from each colon part and ileum.
so this means 6 samples minimum!
and if he would take 2 sample in each part.. it would count 12 like most GI's do in the states.
I am from belgium and they are not so smart inhere.
My mother doesnt believe me if I say that u guys know more of this disease then doctors.
even I know some things better then these guys. GGRRRRRRR.
well.. I tapered of entocort.
tomorrow 3mg.. then back to 0mg a day.
then the inflammation rises again and i will shi* in the calprotectin potty.
How long should i wait to do the calprotectin??
as long as I can do without entocort??
I wonna smack the calprotectin value in there face!!
Ken,kenvh wrote:thx tex!
well.. I tapered of entocort.
tomorrow 3mg.. then back to 0mg a day.
then the inflammation rises again and i will shi* in the calprotectin potty.
How long should i wait to do the calprotectin??
as long as I can do without entocort??
I wonna smack the calprotectin value in there face!!
It is important that you taper off Entocort REAL slowly. I started out with 1 capsule every other day for 30 days. Then 1 capsule every third day for 30 days, then 1 capsule every fourth day for 30 days,.... and so forth.
Then, approx 14 days before the box was empty and I was down to 1 capsule every 6th day or so, I started taking Zyrtec twice a day until the box was empty, and at least 3 weeks after being off Entocort.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Ken,
I'm not familiar with how conditions in the body affect calprotectin levels. Here in this country, that test is normally only used to screen for Crohn's disease or ulcerative colitis, so I don't know how (or if) it works for MC.
Some members here drink or sip a little bone broth at various times during the day. It can be used for cooking vegetables and meats also, because it will add a lot of flavor and nutrients.
Lilia,
I believe that Ken is trying to prove to his doctor that he has MC, and he realizes that his symptoms will relapse when he stops using the Entocort too quickly.
Tex
I'm not familiar with how conditions in the body affect calprotectin levels. Here in this country, that test is normally only used to screen for Crohn's disease or ulcerative colitis, so I don't know how (or if) it works for MC.
Some members here drink or sip a little bone broth at various times during the day. It can be used for cooking vegetables and meats also, because it will add a lot of flavor and nutrients.
Lilia,
I believe that Ken is trying to prove to his doctor that he has MC, and he realizes that his symptoms will relapse when he stops using the Entocort too quickly.
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.
THX Tex. Yes.. I know i must taper slow.
But i wonna prove My inflammation is the problem to the doctor.
He thinks i have NO inflammation.
I taper fast now so i can take the calprotectin test and prove It's NOT normal.
Then i Will take entocort again and taper slowly when it gets better.
Im Down now To 3mg and notice My stoom is already more Lose after 1 day!
Placebo he Days!! I dont think placebo can bind My stoom more.
I hate ignorend doctors!
They also did NOT believe i had bladder inflammation 2 years back.
I proved them wrong!!
Now im in the Same boat.
But i wonna prove My inflammation is the problem to the doctor.
He thinks i have NO inflammation.
I taper fast now so i can take the calprotectin test and prove It's NOT normal.
Then i Will take entocort again and taper slowly when it gets better.
Im Down now To 3mg and notice My stoom is already more Lose after 1 day!
Placebo he Days!! I dont think placebo can bind My stoom more.
I hate ignorend doctors!
They also did NOT believe i had bladder inflammation 2 years back.
I proved them wrong!!
Now im in the Same boat.
Yeah.. I Just Go To another gi specialist and ask for another colonscopy and explain If he wants To take 15 biopsies SO we can find It. First.. I wonna rub the high calprotectin test into the doctors face.
My personal doc is the only doc WHO takes me serious. But he cant argue with gi specilists ofcourse.
SO My personal doc Said to Me that i should do another calprotectin test to prove the gi wrong.
Then My personal doc Will arrange New appointment with other gi specialist.
My personal doc is the only doc WHO takes me serious. But he cant argue with gi specilists ofcourse.
SO My personal doc Said to Me that i should do another calprotectin test to prove the gi wrong.
Then My personal doc Will arrange New appointment with other gi specialist.