Hi, I had my colonoscopy last week , they called today and said I still have CC and LC want and want to try to budesonine yet again, which just Constance’s me......ugh. My first 4 colonoscopies I had they always said I had MC. My question is...are they all the same or are they all different? Why would they be changing terms now after 15 years?
Thanks
Lou Ann
Hope everyone is well.
MC, LC, CC...
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Hi Lou Ann,
There are at least a dozen known different forms of MC, but the only two forms that most GI docs are familiar with are LC and CC. The distinctions are described in detail in the first chapter of Microscopic Colitis, on pages 3–6, but the primary differences between LC and CC are the thickening of collagen bands in the lamina propria in the mucosa of the colon with CC. Both types are marked by lymphocytic infiltration. The usual convention (accepted by most authorities) is that if there is significant collagen band thickening, CC is indicated. If there's no significant collagen band thickening, LC is indicated. But some docs are confused about the distinction, so they mistakenly think that a patient can have both kinds concurrently, and some docs simply refer to both types as MC. MC can segue back and forth between LC and CC as time passes. Why this happens, no one knows. Or if they do know, they haven't published that fact, yet.
You have CC. Calling it CC and LC is redundant (and confusing). One reason why many docs are confused is because the first form described was CC. When LC was discovered (and described) a few years later, it was first called MC. A few years down the road, it was proposed to change the name from MC to LC. Like I said, it's so confusing to some docs that they simply refer to all types as MC.
If budesonide is constipating, you shouldn't be taking it. You would probably be much better off trying cholestyramine. Start with one pack each day, and slowly increase it until you discover a dose that will work for you. Don't exceed 6 packs (24 ounces) per day, but you can divide the doses up and take it twice a day.
I hope this helps.
Tex
There are at least a dozen known different forms of MC, but the only two forms that most GI docs are familiar with are LC and CC. The distinctions are described in detail in the first chapter of Microscopic Colitis, on pages 3–6, but the primary differences between LC and CC are the thickening of collagen bands in the lamina propria in the mucosa of the colon with CC. Both types are marked by lymphocytic infiltration. The usual convention (accepted by most authorities) is that if there is significant collagen band thickening, CC is indicated. If there's no significant collagen band thickening, LC is indicated. But some docs are confused about the distinction, so they mistakenly think that a patient can have both kinds concurrently, and some docs simply refer to both types as MC. MC can segue back and forth between LC and CC as time passes. Why this happens, no one knows. Or if they do know, they haven't published that fact, yet.
You have CC. Calling it CC and LC is redundant (and confusing). One reason why many docs are confused is because the first form described was CC. When LC was discovered (and described) a few years later, it was first called MC. A few years down the road, it was proposed to change the name from MC to LC. Like I said, it's so confusing to some docs that they simply refer to all types as MC.
If budesonide is constipating, you shouldn't be taking it. You would probably be much better off trying cholestyramine. Start with one pack each day, and slowly increase it until you discover a dose that will work for you. Don't exceed 6 packs (24 ounces) per day, but you can divide the doses up and take it twice a day.
I hope this helps.
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.
No, that "miracle recipe" just bulks up the stool to reduce some of the wateriness. At least that's what the benefiber and metamucil are for. The miralax is a stool softener. With this treatment you will still have diarrhea, it just won't be so watery.
Normally, about 90 % of unused bile is reabsorbed (and recovered for future use) in the terminal ileum. If a patient has bile acid malabsorption (BAM), all the unabsorbed bile continues it's trip into the colon, where it promotes diarrhea. Cholestyramine treats BAM by sequestering the bile, so that it cannot cause diarrhea, and it's carried out of the body with the rest of the stool. With the proper dose (and assuming it works for you), cholestyramine will enable the production of normally-formed bowel movements. Research shows that among MC patients, about 40 % of diarrhea cases that don't respond to normal treatment, are due to BAM.
Tex
Normally, about 90 % of unused bile is reabsorbed (and recovered for future use) in the terminal ileum. If a patient has bile acid malabsorption (BAM), all the unabsorbed bile continues it's trip into the colon, where it promotes diarrhea. Cholestyramine treats BAM by sequestering the bile, so that it cannot cause diarrhea, and it's carried out of the body with the rest of the stool. With the proper dose (and assuming it works for you), cholestyramine will enable the production of normally-formed bowel movements. Research shows that among MC patients, about 40 % of diarrhea cases that don't respond to normal treatment, are due to BAM.
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.
Gotcha on the miracle recipe, makes sense....I’ll will call and talk to them about the cholestryamine. Now your words terminal ileum sure do spark my interest!!!! This scope and my last one, three years ago...I kept telling them of my discomfort in a specific area when I was bloated and such to the right of my belly button and both times they say that would be the area of my terminal ileum and I had no clue what it was but they assured me it looked fine in both tests....can that actually be a problem? They said it could just be discomfort from a small fixed hernia I had in that area during my gallbladder removal. I know I said no more questions lol but terminal ileum sure made a bell go off....
I appreciate you !
Lou Ann
I appreciate you !
Lou Ann
I must be missing something here. Do those folks look as though they're awake? 
If your gallbladder has been removed, your liver is dribbling bile acid into the top end of your small intestine continuously. When you still had a gallbladder, bile was only delivered as needed, when your digestive system was actually digesting food. If there's no food to be digested in your digestive tract, that bile is there when it shouldn't be, and for most people (not everyone) who've had their gallbladder removed, it causes diarrhea. To prevent diarrhea, most doctors will prescribe cholestyramine, in order to sequester that excess bile. I don't understand why they haven't considered that. This applies to everyone, not just MC patients. But for MC patients, BAM is especially important as a reason for continuing diarrhea despite following a normal treatment program.To answer your question about the terminal ileum: Yes, it can certainly be part of the problem because in most MC cases, the right side colon and the terminal ileum contain the highest levels of inflammation (compared with the rest of the colon). The terminal ileum is the tail end of the small intestine, and most doctors don't even consider it to be important for MC patients (because MC is incorrectly described as a disease that's restricted to the colon). They can barely reach the terminal ileum during a colonoscopy. The cecum separates the terminal ileum from the colon, and prevents backflow. For some patients who have a longer-than-normal colon, the terminal ileum is out of reach. Some doctors don't even bother to reach it during a colonoscopy because getting through the ileocecal valve can be tricky. But when the terminal ileum is inflamed, it cannot properly absorb nutrients, bile acid, or anything else. That creates problems for most MC patients.
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.
Lol, I believe their eyes were open when they were talking to me, but I get what you mean, that’s funny! 
My report says the examined portion of the ileum looked normal and there is a picture....there is a picture of that valve also, along with the rest of the colon. Why does no one care about small intestines? Can they cause problems that would cause inflammation and pain in that area to the right of the belly button or just that ileum? I was given cholestyramine once after my first colonoscopy 15 years ago when my gallbladder was in tact, and for the life of me I can’t remember why I didn’t like it. My guess would also be constipation, but I’m not sure. Now that you explained how it works with no gallbladder it would make sense to try it agin.
Thank you so much for dealing with my confusion!
Lou Ann
My report says the examined portion of the ileum looked normal and there is a picture....there is a picture of that valve also, along with the rest of the colon. Why does no one care about small intestines? Can they cause problems that would cause inflammation and pain in that area to the right of the belly button or just that ileum? I was given cholestyramine once after my first colonoscopy 15 years ago when my gallbladder was in tact, and for the life of me I can’t remember why I didn’t like it. My guess would also be constipation, but I’m not sure. Now that you explained how it works with no gallbladder it would make sense to try it agin.
Thank you so much for dealing with my confusion!
Lou Ann
There are many published research articles describing how the small intestine is also inflamed in most MC patients. For what it's worth, there are published research articles describing how the colon is also inflamed in most celiac patients. If you need links to some of the articles, let me know. Most doctors aren't even aware of this overlap between MC and celiac disease, because as I mentioned, MC was originally incorrectly described as a disease of the colon, so most doctors look no further than the colon when diagnosing and treating MC, and they look no further than the small intestine, when diagnosing and treating celiac disease. But many celiacs have additional food sensitivities besides gluten, similar to MC patients.
Regarding the photos in your report: The ileum and colon will naturally look fine to the naked eye — that's why they call it "microscopic" colitis.
Be sure you ask for the original formulation of cholestyramine, by Sandoz. Many members point out that most of the other versions simply do not work for them, especially the lite versions. Good luck with your treatment.
Tex
Regarding the photos in your report: The ileum and colon will naturally look fine to the naked eye — that's why they call it "microscopic" colitis.
Be sure you ask for the original formulation of cholestyramine, by Sandoz. Many members point out that most of the other versions simply do not work for them, especially the lite versions. Good luck with your treatment.
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.
After my own experimentation with Sandoz cholestyramine packets (not lite) and Colestipol pills, I have found that just 1/2 packet at night, about an hour before going to bed, works best for me. The Colestipol pills were too much for me and gave me stomach discomfort.
Everyone is different. Good luck! I hope it works for you.
Susan
Everyone is different. Good luck! I hope it works for you.
Susan