Colonoscopy Report Please help

[motheroftwins]

Hi I just got my colonoscopy report back can someone please help? I was diagnosed with Collagenous Colitis on Sept 18, then after I spoke to my doctor today he said I also have Crohn's and UC. I just need to understand what I have. :( Kind of scared right now!


My colonoscopy report:

A. Biopsy cecum

- Active Colitis
-Negative for Dysplasia

Comment:
Gland architecture is maintained. There is moderate/severe mixed infiltrate with neutrophils and eosinophils. Acute inflammatory cells spill focally into surface epithelium, crypt abscesses and granulomas also identified.

B. Biopsy, Acending Colon

-Active Colitis
-Negative for Dyplasia

Comment:
The histologic features are similar to those described on specimen A. This inflammatory change and edema would be consistent with a prominent fold.

C. Biopsy, Sigmoid Colon

-Histologic features consistent with Collagenous Colitis
-Negative For Dyplasia

Comment:
There is a severe infiltrate of lymphocytes and plasma cells with lymphoid aggregates. The basement membrane zone is markedly thickened, with hyalinized collagen beneath the surface epithelium. Degeneration of the surface epithelium is evident, with exocytosis of lymphocytes. Clinical correlation is recommended.

Here is more Procedure findings: The patient had moderate/severe inflammation around the ileocecal valve. She had a single small polyp in the ascending colon near the hepatic fixture and in the rectum the patient had a grade 3 hemorrhoids along with multiple small hyperplastic inflammatory type polyps.

[Stanz]

Nothing I see here should be anything that you should afraid of MOT, it's pretty much what most of us learned and we are mostly doing fine after dietary modifications. Being GF and seeing the positive results of that can take 6 months or longer, so don't give up.

If your doctor thinks this means you have Crohn's, then you may also have a bacterial component here, so ask him about this: http://www.centralfloridafuture.com/new ... ?pagereq=1, print it out and leave it with he/she to read. I'm the resident believer here as MAP as the cause of a great deal of the symptoms we deal with and we are possibly close to a cure for Crohn's, which IMO, is a disease that is caused by a bacterial infection that is secondary to intestinal damaged caused by gluten intolerance.

None of this is gonna kill you, I understand your misery, but you can and will get better. Stress is your enemy here, take a deep breath and believe you will find the answers to what is making you sick. Close your eyes and visualize that you will be OK, that you will heal and be healthy again. I know that sounds new-agey, which I couldn't be further from, but it does help to not focus on the negative.

Unfortunately, or not, most of us have had to learn to be our own best advocates with this disease, and I don't believe for a minute it's incurable.

Connie

[motheroftwins]

Hi Connie, thank you so much for your reply. Very interesting read and nice to know there may be a cure. I realize this is not going to kill me. I am scared any ways, just kind of silly like that.

[tex]

Hi Suzie,

Some doctors love to scare people. They apparently somehow think that it wins them points, or prestige, or respect, or something, but I disagree.

First the good news: I don't see any evidence of UC at all. The only markers that could possibly be associated with it are in the notes about the cecum biopsy. UC always starts at the distal end of the digestive tract, though (the anus). And your doctor apparently failed to take a biopsy sample in the rectum. He was either lazy, or he doesn't know any better, but three biopsy samples is extremely stingy — he should have taken more like a dozen, to do a reasonable job of surveying the colon. Anyway, UC begins at the distal end and progresses upward, so if any UC existed at the cecum, it would have to exist every where downstream, and your sigmoid colon biopsy was clean (only CC), so you do not have UC (as best can be determined from that report.

The thickened basement membrane mentioned in the notes from the sigmoid colon biopsy sample refer to thickened collagen layers in the lamina propria of the sigmoid colon. That marker is associated with collagenous colitis, and nothing else — it is not associated with UC or Crohn's.

OK, now for the bad part: The comment about gland architecture being maintained is good, and that's a pretty strong indication that Crohn's disease is not present. The moderate to severe mixed infiltration of neutrophils and eosinophils, however, is more worrisome. While an increase of eosinophils is common with collagenous colitis, an elevated neutrophil count can be associated with a more severe form of IBD, such as Chron's disease or UC, but as I already mentioned, if you had UC it should be continuous from there on down to the anus, and obviously, that is not the case. The acute inflammatory cells at the surface of the epithelium (the mucosa) mentioned in the report could refer to neutrophils or eosinophils, but if it refers to eosinophils, that would be typical of either lymphocytic colitis or collagenous colitis. The most worrisome part of the report is the mention of crypt abscesses and granulomas, because those are typically associated with Crohn's disease. However, there is a type of microscopic colitis (that I would bet almost anything that your doctor has never heard of), known as "MC with granulomatous inflammation". Obviously, there is certainly a possibility that this could be the reason for that notation in your pathology report.

The bottom line is, I agree with Connie. While I could not totally rule out Crohn's disease based on that pathology report, I see nothing in the report that definitely confirms the presence of Crohn's disease (and certainly no evidence of UC), so I'm inclined to believe that your doctor is trying to make mountains out of molehills. You definitely have collagenous colitis, but beyond that I'd have to see much more convincing evidence to suspect any other IBD.

I'm not a doctor, though, so please bear that in mind.

Here's a reference that you can show your doctor:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774829/

Tex

[cjbndtsn]

Tex you are brilliant!!!!!!!!! I would have so much more confidence in Tex's statements than the GI doc. Amazing amount of knowledge from our Tex................

[motheroftwins]

Tex, Wow, Wow, Wow.....Thank you so much for your clear explanation. The last thing I need right now is to be scared over nothing. I have a question... what do they mean by prominent fold? Also during the colonoscopy, Procedure findings: The patient had moderate/severe inflammation around the ileocecal valve. She had a single small polyp in the ascending colon near the hepatic fixture and in the rectum the patient had a grade 3 hemorrhoids along with multiple small hyperplastic inflammatory type polyps. What does this mean??

The doctor or should I say doctors never explain. Thank you again Tex your the best!! :)

[Stanz]

Yes, he is, and I'd bet that having grade 3 hemorrhoids and small polyps is probably pretty normal for someone who had twins.

[tlras]

Yes, we are so thankful for Tex and his knowledge. Though I have to say it's pretty sad when you have to come to the forum for answers since you can't get any from your own doctor. My doctor is terrible. Giving me "yes" or "no" answers and that's when I'm lucky enough to get a question in or two. He has a smug look on his face all the time and I actually think I'm a little scared of him. He gave me my diagnosis....gave me no explanation on what it was....though I didn't ask as I had done my research. He quickly put me on Asacol (didn't work) and rushed me out of the room. I have many questions for him when I see him at the end of the month but he will only act like I'm wasting his time. Will find a new doctor after that.

I hope you get definitive answers soon. Meanwhile, change the diet and see what happens. Good luck!

Terri

[motheroftwins]

Hi Suzie,

Some doctors love to scare people. They apparently somehow think that it wins them points, or prestige, or respect, or something, but I disagree.

First the good news: I don't see any evidence of UC at all. The only markers that could possibly be associated with it are in the notes about the cecum biopsy. UC always starts at the distal end of the digestive tract, though (the anus). And your doctor apparently failed to take a biopsy sample in the rectum. He was either lazy, or he doesn't know any better, but three biopsy samples is extremely stingy — he should have taken more like a dozen, to do a reasonable job of surveying the colon. Anyway, UC begins at the distal end and progresses upward, so if any UC existed at the cecum, it would have to exist every where downstream, and your sigmoid colon biopsy was clean (only CC), so you do not have UC (as best can be determined from that report.

The thickened basement membrane mentioned in the notes from the sigmoid colon biopsy sample refer to thickened collagen layers in the lamina propria of the sigmoid colon. That marker is associated with collagenous colitis, and nothing else — it is not associated with UC or Crohn's.

OK, now for the bad part: The comment about gland architecture being maintained is good, and that's a pretty strong indication that Crohn's disease is not present. The moderate to severe mixed infiltration of neutrophils and eosinophils, however, is more worrisome. While an increase of eosinophils is common with collagenous colitis, an elevated neutrophil count can be associated with a more severe form of IBD, such as Chron's disease or UC, but as I already mentioned, if you had UC it should be continuous from there on down to the anus, and obviously, that is not the case. The acute inflammatory cells at the surface of the epithelium (the mucosa) mentioned in the report could refer to neutrophils or eosinophils, but if it refers to eosinophils, that would be typical of either lymphocytic colitis or collagenous colitis. The most worrisome part of the report is the mention of crypt abscesses and granulomas, because those are typically associated with Crohn's disease. However, there is a type of microscopic colitis (that I would bet almost anything that your doctor has never heard of), known as "MC with granulomatous inflammation". Obviously, there is certainly a possibility that this could be the reason for that notation in your pathology report.

The bottom line is, I agree with Connie. While I could not totally rule out Crohn's disease based on that pathology report, I see nothing in the report that definitely confirms the presence of Crohn's disease (and certainly no evidence of UC), so I'm inclined to believe that your doctor is trying to make mountains out of molehills. You definitely have collagenous colitis, but beyond that I'd have to see much more convincing evidence to suspect any other IBD.

I'm not a doctor, though, so please bear that in mind.

Here's a reference that you can show your doctor:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774829/

Tex

Hi Tex, I made a typo, sorry. It was written by the Pathologist as the The comment about gland architecture being maintained, actually it wasn't maintained and they did find Active Colitis in biopsy C. Sorry again for the typo's. It is really hard to type from a piece of paper. I really do appreciate your expertise on the subject.

[motheroftwins]

Thank you Connie and Terri, @ Terri, I know what you mean but I really from the bottom of my heart appreciate the knowledge and wisdom that I've gotten here.

~Suzie

[tex]

Suzie,

IMO, a lot of medical jargon sucks. They apparently think it's cool to communicate using unconventional terminology in order to prevent their patients from understanding their notes and many of their comments. This probably dates back to the days when sorcery and medicine were closely aligned, and the medical community still seems to prefer to be shrouded in an aura of mystery. True, many of those terms accurately describe the conditions for which they are used, but by the same token, many others tend to be vague and ambiguous, and much better selections could be made (if ordinary language was considered to be acceptable). LOL.

There are many folds in the mucosa of the colon and some are more prominent than others. The hepatic flexure is the first bend in the ascending colon, for example, and that bend causes a prominent fold. In some cases, it's more prominent than others, and can even act as a blockage, if it's significant enough. (That has nothing to do with your report, I'm just pointing out that prominent folds are common). Swelling due to inflammation often causes folds. His comment, "This inflammatory change and edema would be consistent with a prominent fold" is somewhat ambiguous and confusing, because he never stated that a prominent fold was even present, but I will guess that he was trying to say that a prominent fold in that area was probably caused by swelling of the mucosa (the top layer of the lining of the colon). Or, he could be inferring that the prominent fold in the hepatic flexure is a common site for inflammation and swelling. Either way, it appears to be superfluous information. IOW, it tells us nothing specific about your situation — it's just an idle comment. Sort of like saying that the sun is hot. Well, that's true, but we already knew that. Anyway, that's why I didn't bother to mention it in my previous post.

Also during the colonoscopy, Procedure findings: The patient had moderate/severe inflammation around the ileocecal valve. She had a single small polyp in the ascending colon near the hepatic fixture and in the rectum the patient had a grade 3 hemorrhoids along with multiple small hyperplastic inflammatory type polyps. What does this mean??

Anyone who has MC will typically have significant inflammation around the ileocecal valve, because most people who have MC not only have inflammation in their colon, but their terminal ileum is almost always also inflamed (many GI specialists don't seem to be aware of that, though, so they are surprised when they find inflammation around the ileoceal valve (the valve between the ileum and the cecum). The fact is, the inflammation associated with MC is almost always most prominent in the ascending colon and the terminal ileum. Since the cecum and the ileocecal valve are caught in the middle, they will almost surely be inflamed, as well. Hopefully, the GI doc removed that polyp near the hepatic flexure during the colonoscopy procedure (if he didn't, some would view that as grounds for a malpractice suit).

Grade 3 hemorrhoids tend to prolapse and remain distended. Here is a list of the various grades:

Grade I: No prolapse. Just prominent blood vessels.[11]
Grade II: Prolapse upon bearing down but spontaneously reduce.
Grade III: Prolapse upon bearing down and requires manual reduction.
Grade IV: Prolapsed and cannot be manually reduced.

http://en.wikipedia.org/wiki/Hemorrhoid

"Manual reduction" means that it has to be poked back into place or it will remain prolapsed.

Note that for most of us, when we get our MC symptoms under control, the hemorrhoid issues usually fade away, also.

Hyperplastic colon polyps are the most common type of colon polyp, and they are typically benign. While they should normally be removed, most colon cancers arise from adenomatous polyps, not hyperplastic polyps. I'm not sure what he means by "inflammatory", but that probably simply refers to the fact that their location in the rectum makes them prone to inflammation due to the physical stress of bowel movements, and of course, they are likely to add to the inflammation of surrounding tissue. Surely he also removed them during the procedure and sent them to the pathology lab for analysis to verify that they were benign.

You're most welcome,
Tex

[tex]

Hi Tex, I made a typo, sorry. It was written by the Pathologist as the The comment about gland architecture being maintained, actually it wasn't maintained and they did find Active Colitis in biopsy C. Sorry again for the typo's. It is really hard to type from a piece of paper. I really do appreciate your expertise on the subject.

Disruption of normal architecture is not a good sign, (it can sometimes be a marker of Crohn's disease), but it can also occur with severe damage due to gluten sensitivity, such as in celiac disease when there is a Marsh III or IV level of damage to the villi in the small intestine. Those glands are called crypts, and while crypt architecture is normally maintained with MC, some degree of crypt distortion is not uncommon, especially with lymphocytic colitis. Again, I still believe that your doctor may be screaming "WOLF!", when he's actually looking at a fox.

The active colitis in biopsy C refers to collagenous colitis, not Crohn's disease.

Incidentally, the "Negative For Dyplasia" comment on all three biopsy samples means that there is no evidence anywhere of any malignancy, so they definitely ruled out any colon cancer.

Tex

[motheroftwins]

Hi Tex, you're a genius and appreciate all the information you have just given me. I went to the gym this morning to do some kickboxing to let some anger out toward my doctor, and it helped. I have a minor flare going on which is my own fault because I allowed myself to get stressed. My plan of action today is to relax and be good to myself and not worry about the house.

In regard to celiac disease, I have been treating myself like I had it for over three years now even though I tested negative. When I first started having bloody diarrhea with awful abdominal pain and bouts of vomiting. I am still on a gluten-free diet... and I avoid certain foods like the plague. At the moment, I am on an Enteral Nutrition diet, and I am hoping to introduce real foods soon. I guess my next question is how to attack this disease at every angle. At the moment, I am unsure if I trust my doctor and would much rather hear from an expert, like you Tex. :)

[Zizzle]

Wow, you are on an Enteral Nutrition diet (as in, zero food allergens?) and still having flares? I've often wondered about how I would do on one of those liquid diets. I suspect stress, infections and other factors can still get your mast cells going, despite the absence of food triggers. Then again, not knowing what's in the formula you're on, one has to wonder if we might react to the non-food protein ingredients.

You mentioned having bloody diarrhea, which is extremely rare in MC. Was it bright red, fresh blood, as would originate from hemorrhoids, or was it black, sticky stuff, meaning it orginated further up the GI tract?

[tex]

I hesitate to bring this up, because the episode of bloody diarrhea and vomiting that you had early on may have been due to an infection of some type, but as Zizzle mentioned, those can also be symptoms of Crohn's disease. Of course, the bloody diarrhea could also have been due to hemorrhoids, especially if the blood was bright red (IOW fresh). If you had developed Crohn's disease in your colon three years ago, the lesions should have been quite visible during the colonoscopy exam, but obviously, they were not noted. And if Crohn's was present in your small intestine, the blood would not have been bright red. So the odds are high that you had an infection.

And nausea/vomiting is somewhat common with MC. That was one of my most troubling symptoms, because it kept me from being able to work on quite a few days, at least for part of the day.

I guess my next question is how to attack this disease at every angle.

If you search the archives of this board, you should be able to find past discussions on virtually every aspect of the disease, and if you can't find what you need, never hesitate to ask questions.

At the moment, I am unsure if I trust my doctor and would much rather hear from an expert, like you Tex.

Most of us have some doubts about the qualifications of our GI specialist to treat this disease, but please don't put too much faith in me, because I'm not a medical professional, and obviously I can't prescribe any medical treatments or offer any medical advice (that would be construed as practicing medicine without a license). I can only tell you what I have experienced and what I would do if I were in your situation. As I'm sure you're well aware, you will continue to need the services of your doctors if you need any additional exams or other testing. Also, for me to try to second guess your doctors' advice is rather risky, because they have all your medical records in front of them (and I don't), and hopefully they also have a lot of experience treating similar cases. I'm just a student of this disease, like everyone else here.

For information on treating this disease by diet changes, though, most doctors are not much help, (they're trained to write prescriptions for drugs), and we do much better by sharing information here, comparing notes, and working out our own individual treatment plan. And like Zizzle, I would be suspicious of some of the ingredients of that enteral nutrition product.

Tex