Thursday, May 23, 2013

Colon Colon Colon

Just thought I would use the title of this post to get you used to the subject matter (and to alert you in case you wish to skip this post!)

I also am posting pictures of MY colon.  I promise they are not gross.

All of these look normal to the naked eye except for the upper right one,
which shows colitis: it looks like a rash

here's a close-up
"hepatic flexure" = an intestinal turn near the liver

I talked with my Gastroenterologist (Dr. R) this morning, and 
everything is more complicated than I expected.  

He told us that immediately after the procedure that I had areas of "apparent colitis," and that he took a bunch of  biopsies to find out why those areas were inflamed.  
There are a few new things he discovered from the pathology report.

#1:  Even though he was only able to visually identify a few areas of what looked like mild inflammation during the procedure, there is inflammation along the whole length of my colon, some of it only visible at the microscopic level.  Eek!  He said that whatever process is causing this is changing the "architecture" of the colon.  That is a weird doctor-y way to phrase it, but I looked it up and it means that the mucous-producing walls of my intestines aren't able to do their job because they're wounded somehow, so my digestive system is not operating at peak efficiency.

So far it is not certain what is causing the inflammation.

#2:  It is possible that the inflammation is related to endometriosis affecting my colon from the outside (because the endometriosis implants would be on the outside wall of the colon, they wouldn't be visible from the inside during a colonoscopy).

#3:  However, because the inflammation is diffuse (throughout my entire colon as opposed to only in particular spots, which would be called "focal lesions"), he believes that the problem is "primary to the colon" (e.g. colon-related rather than a result of something outside the colon).  
He suspects Crohn's Disease.  This was completely unexpected.  It was not on my radar at all.  

He has ordered a specialized blood test called the IBD sgi Diagnostic test, but it needs to be drawn in a specialty lab, and the four labs I have called so far don't do it.  Next I will call the Prometheus company themselves to find out who in my area can draw the blood.  

This lab test shows "genetic and inflammation markers to help differentiate inflammatory bowel disease (IBD) versus non-irritable bowel disease and Crohn's Disease versus Ulcerative Colitis".  So it will presumably say one of the following:

"Yes, you have an IBD and it is Crohn's"
"Yes, you have an IBD and it is Ulcerative Colitis"
"No, you do not have an IBD".

Irritable Bowel SYNDROME, by the way, is a separate animal from the two main forms of INFLAMMATORY bowel disease (Crohn's Disease and Ulcerative Colitis).  
Irritable Bowel Syndrome is characterized by abdominal discomfort and digestive difficulties, but symptoms do not stem from colitis or any other observable problem in the digestive system.  It's pretty much what they "diagnose" when you have digestive difficulties and they rule out the other reasons that might be the case.

This is all weird, because I don't have many of the symptoms of Crohn's.  
I guess I have a good portion of them, but I always thought they were caused by other things (like gluten intolerance or endometriosis!)

I should probably add that it's possible that my endometriosis is NOT back, after all, but that I have been dealing with a Crohn's flare-up instead.  The symptoms are surprisingly similar.

I am currently waiting for a return phone call from Dr. H.'s nurse (Dr. H. is the pelvic pain specialist I saw a few months ago).  The Gastroenterologist said it would be helpful to be able to see the colon from the outside as well as from the inside, and the only way to do that is via laparoscopy (small camera through an incision in the belly button).
I would like to know what Dr. H. thinks about that.

I have an appointment tomorrow morning with my original gynecologist, Dr. M.  He retired soon after my hysterectomy in 2002.  He now works for the Women's Center of a very highly respected hospital in Phoenix.  After Dr. H. suggested I wait as long as possible to have any surgery in spite of suspected intestinal involvement, I thought it might be a good idea to get a second opinion.  I am nervous about anything growing anywhere near my intestines and I don't think it's wise to just leave it alone without knowing what it's doing.  So I thought I would ask someone who has a lot of experience and knows my history.  

So there you have it - another leg of an interesting journey!

Next post - kitten cuteness and no more colons!!!

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