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09-17-2012, 08:21 PM   #1
motheroftwins
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Collagenous Colitis?

Hello, I had a colonscopy done on Sept. 13 and they found Collagenous Colitis in one of my biopsy and they also said my tissue in my colon is breaking down and they called it hyalinized colitis. On my CT scan they found lesions and active colitis. I was hoping someone could help me figure out what I have due to what they found during my CT and colonoscopy?

I haven't spoken to the GI doctor yet and only spoke with the ER nurse.
09-18-2012, 12:58 PM   #2
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Hmmm, this is quite an odd presentation. Collagenous Colitis does NOT cause lesions, it is microscopic in nature and can only be seen under a microscope. I'm not sure what Hyalinized Colitis is though Maybe someone else out there does. Dustykat ?

Have they evaluated you for Celiac Disease?

What are your specific symptoms?
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09-18-2012, 02:09 PM   #3
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Hmmm, this is quite an odd presentation. Collagenous Colitis does NOT cause lesions, it is microscopic in nature and can only be seen under a microscope. I'm not sure what Hyalinized Colitis is though Maybe someone else out there does. Dustykat ?

Have they evaluated you for Celiac Disease?

What are your specific symptoms?
Hi David, thank so much for responding and sorry about the odd presentation. I did take a blood test for Celiac Disease and it was negative.
My symptoms:
Diarrhea (several times a day)
moderate to severe adominal pain
Fissures (feels like razor blades everytime I have D)
low grade temp
Rectal bleeding

Basically, I feel yuck... During the CT scan it also showed inflammation in my small Bowel and active colitis in my colon as will as lesions?. Colonoscopy mild infammation in my rectal area. So, I am so confused... One of my biopsies showed Collagenous Colitis and another biopsy showed a break down of tissue in my colon. At first my dr. thought I had IBD (going toward UC) and this was before my colonoscopy and CT scan. However, my husband thought he heard him say mild IBS during the colonoscopy?? During my ER visit they said Colitis so at this point I am venting a bit, and pulling my hair out because I am so confuzzled.
09-18-2012, 03:40 PM   #4
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I don't know what hyalinised colitis is but I do know the term hyalinised. From my understanding it is used across a variety of disorders, it is a descriptive term and relates to the process of the damage caused to tissue.

I have read of it in relation to granuloma's, which are a small masses of tissue that develop in response to infection/inflammation as the body attempts to repair itself, and it may well be what it relates to in your case. When a granuloma becomes hyalinised it starts to become fibrotic at the periphery of the granuloma and work its way to the centre so that it eventually becomes completely fibrotic or hyalinsed. The granuloma would have the appearance of scar tissue.

This is just my interpretation of things so don't hold me to it!

Dusty. xxx
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09-18-2012, 04:12 PM   #5
motheroftwins
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Hello Dusty and David the dr. just diagnosed me... I do have Microscopic Colitis Collagenous. He is putting me on Prednisone, Yikes. Now I am nervous and scared. lol
09-18-2012, 04:21 PM   #6
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Interesting. Well, welcome to the Microscopic Colitis club

Frankly, I'd get a second opinion based upon everything you've described but if you're comfortable with the diagnosis, then all is well and I hope the treatments he prescribes gets you fixed up quick
09-18-2012, 04:29 PM   #7
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Interesting. Well, welcome to the Microscopic Colitis club

Frankly, I'd get a second opinion based upon everything you've described but if you're comfortable with the diagnosis, then all is well and I hope the treatments he prescribes gets you fixed up quick
I am going to get a second opinion But the medicine he is having me take is used both UC and Crohns. I think??
09-18-2012, 04:32 PM   #8
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Indeed it is.
09-19-2012, 01:32 AM   #9
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Indeed it is.
lol! I have been reading through the threads and learning so much. Hoping for suggestions on what to do first while I am on Pred. As, far as health... I am pretty active or at least used to be. I still do yoga but find ballet toooo much for me right now. It looks like I also may need to be on vitamin B12? Any other suggestions would be helpful?
09-19-2012, 02:35 PM   #10
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IF all you have his collagenous colitis then you might not be deficient in B12. But with the chronic diarrhea I would request a comprehensive vitamin panel that included it and every other vitamin/mineral they're willing to test.
09-19-2012, 07:24 PM   #11
motheroftwins
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Well do....
09-20-2012, 08:04 PM   #12
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testing, testing... Trying to get my signature to work
09-20-2012, 08:05 PM   #13
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It will only show in the first post you make in thread It'll show next time you post a new thread or if you reply to a thread you haven't before.
09-20-2012, 08:53 PM   #14
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Just looking at your signature, be sure to get that vitamin B12 test done. And have them do vitamin D for good measure.
09-20-2012, 09:01 PM   #15
motheroftwins
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I will definately let the GI dr. know, I am interested in getting that done and any other vitamin mineral test they do.
09-22-2012, 11:28 PM   #16
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I received a call today telling me my blood test results that were not in normal range and I don't have the numbers However maybe someone could give some input?? Thanks

RBC low
HCT low
MCH high
Total Lymph # high
Calcium low
Chloride high
total protein low
globulin low

Ast/Sgpt low
Alt/ SGpt low
09-22-2012, 11:54 PM   #17
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Without the actual numbers this is extreme speculation but if you had those results and just Collagenous Colitis I'd wonder what the cause was of some. If you had Crohn's I'd say get your vitamin B12 and vitamin D levels tested and you're probably dehydrated, anemic, and suffering from malabsorption. In your case, I'm guessing they're going to warrant additional testing.

The low alt/ast is confusing as I thought it was either normal or elevated as they're for liver function. But I'm admittedly not well versed on this kind of stuff.

I'll be quite curious what your GI says.
09-28-2012, 12:31 AM   #18
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Without the actual numbers this is extreme speculation but if you had those results and just Collagenous Colitis I'd wonder what the cause was of some. If you had Crohn's I'd say get your vitamin B12 and vitamin D levels tested and you're probably dehydrated, anemic, and suffering from malabsorption. In your case, I'm guessing they're going to warrant additional testing.

The low alt/ast is confusing as I thought it was either normal or elevated as they're for liver function. But I'm admittedly not well versed on this kind of stuff.

I'll be quite curious what your GI says.
Thanks David for the reply. I have been really sick for a couple of days and would have replied sooner. My GI dr appointment has been changed from September 25 to October 16 hopefully, I can get more clear answers then.
As always thank you for your honesty.
09-28-2012, 12:33 AM   #19
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I'm sorry you've been feeling bad And that stinks that your appointment got moved back.

*hugs*
09-30-2012, 10:43 AM   #20
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I am feeling so much better... The Prednisone is finally kicking in, and I am starting to feel human. The trouble with me when I get sick all I want to do is sleep. I requested my biopsie report be sent to me by mail, on Friday. So, hopefully I'll be getting the report Monday or Tuesday, fingers crossed. I got sick and tired of waiting, but I am sure I can get a much better explanation here, then at the GI appointment.
10-02-2012, 04:03 PM   #21
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My colonoscopy report:

A. Biopsy cecum

- Active Colitis
-Negative for Dysplasia

Comment:
Gland architecture is not 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

-Active Colitis
-Histologic features consistent with Collagenous Colitis
-Negative For Dyplasia

Comment:
The histologic features are similar to those described on specimen A and B.
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.

Thanks for reading and comments would be helpful.

Edited to fix a couple of my words...

Last edited by motheroftwins; 10-03-2012 at 12:57 AM.
10-02-2012, 04:17 PM   #22
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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.
10-02-2012, 04:23 PM   #23
motheroftwins
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Spoke with the doctor and my New diagnoses is Ulcerative Colitis and Collagenous Colitis. He didn't want me to be concerned and I guess tried to sugarcoat my diagnoses which kind of makes me angry. So now my question is... where do I fit in the forum??
10-02-2012, 04:25 PM   #24
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While granulomas can be present with microscopic colitis, they are rare and much more common in Crohn's disease. That you had visual procedural findings of moderate to severe inflammation around the ileocecal valve and the granulomas in conjunction with what Dustykat and Aussie said in this and your other thread once again brings me back to Crohn's disease or MAYBE an infection or other disease mimicking it.

With microscopic colitis, there are not visual findings of moderate to severe inflammation around the ileocecal valve. THAT needs to be explained.
10-02-2012, 04:29 PM   #25
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Spoke with the doctor and my New diagnoses is Ulcerative Colitis and Collagenous Colitis. He didn't want me to be concerned and I guess tried to sugarcoat my diagnoses which kind of makes me angry. So now my question is... where do I fit in the forum??
With the severe inflammation of the IC valve, non-continuous inflammation in the colon and then the severe IC valve inflammation, and granuloma, I question the UC diagnosis.

I still think you need a proper second opinion.
10-02-2012, 04:34 PM   #26
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While granulomas can be present with microscopic colitis, they are rare and much more common in Crohn's disease. That you had visual procedural findings of moderate to severe inflammation around the ileocecal valve and the granulomas in conjunction with what Dustykat and Aussie said in this and your other thread once again brings me back to Crohn's disease or MAYBE an infection mimicking it.

With microscopic colitis, there are not visual findings of moderate to severe inflammation around the ileocecal valve. THAT needs to be explained.
I do not have a infection he has now given me the diagnoses of having UC and CC... I am just confused and I thought the report would give me answers and now I have more questions.

The CC is Crohns Colitis sorry..
10-02-2012, 04:37 PM   #27
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If you have Ulcerative Colitis your case would be atypical.
10-02-2012, 04:37 PM   #28
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Oh. Wait. Ok, so you have Crohn's Colitis and Ulcerative Colitis?
10-02-2012, 04:49 PM   #29
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Oh. Wait. Ok, so you have Crohn's Colitis and Ulcerative Colitis?
To be honest I am confused too. According to the doctor I have Crohns, UC and have area's of Collagenous colitis. So what the heck does all this mean. I am seriously in tears! I feel like I am stupid and I am just soooo angry right now.

10-02-2012, 05:04 PM   #30
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You are not stupid.

It means you need a second opinion.

Now, with all that said, IF the doctor is correct, then you treat the Crohn's disease and everything else should fall into line as well. But I don't think you have all three. Just having both UC and CD is very rare.
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