What Does it mean to be in remission

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bubba
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What Does it mean to be in remission

Post by bubba »

If you are able to get the diarrhea and inflammation under control (I can feel the inflammation) through diet, does this mean that you are in remission, and would that then mean that the Microscopic Colitis (in my case Collagenous Colitis) would no longer show up in a colon biopsy? Also, does the Budesonide do anything more than control symptoms?
Thank you,
Cathy
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tex
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Post by tex »

Everyone's interpretation of "remission" is somewhat different (because some patients aren't able to reach complete remission, or they had different symptoms to begin with). My interpretation is: complete resolution of symptoms, and a return to whatever condition one was in before the disease began (except for the lifestyle changes that we must make in order to remain in permanent remission).

Yes, resolution of inflammation should bring remission, and after your intestines heal (which can take from three to five years for adults) your biopsy cellular histology should return to normal. Kids can heal in less than a year. In other words, after you heal, biopsies taken during a colonoscopy should contain none of the markers of MC.

The budesonide reduces the inflammation level, but without diet changes, that level goes right back up with each meal. That means that if we don't change our diets to avoid our intolerances, we would have to take budesonide forever, in order to control the inflammation.

As to what else it does, consider this. About 90 % of the bile in our digestive system is unused, and that bile is reabsorbed in the terminal ileum. When this reabsorption fails (because the terminal ileum as usually inflamed in MC patients), we may develop diarrhea. This condition is known as bile acid malabsorption (BAM). Here's a bit of trivia that your doctor probably doesn't even realize: Budesonide helps to reduce fat malabsorption, Presumably, that's why many people gain weight while they're taking budesonide.

This statement is my own theory, based on the known fact that cortisol controls bile acid uptake. That implies that more fat in the diet will be absorbed when budesonide is used, rather than being carried on into the toilet with the bile emulsion.

Here's a link to an old thread from nine years ago, where the same question was asked:

https://perskyfarms.com/phpBB2/viewtopi ... +remission

Tex
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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.
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Post by bubba »

Once again, thank you so much for your answers. I am so thankful to have come across this forum. Thank you for the link to the previous thread for the same question as well. I'm still trying to figure out what I can and can't eat. It seems I can't eat anything. But, I'm sure that is because of all of the inflammation I have. I'm feeling a bit frustrated that this part isn't easier to figure out, having been strictly gluten free for 17 years, I thought I would be able to pinpoint it more easily. I will be ordering testing from Enterolab for help with this. Debating right now if the Budesonide would be helpful to get the inflammation under control while working on the diet end. Seems I have time to debate as my insurance company has not approved my prescription to Budesonide,and I am waiting on that. I haven't felt this ill since working out my gluten intolerance 17 or 18 years ago. Maybe Collagenous Colitis along with Celiac Disease was an issue all along, and it has been in remssion all this time until it reared its ugly head 5 months ago. Who knows why...
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Post by brandy »

Bubba,

It is not uncommon for folks that take budesonide but do not change diet to have a serious reflare within 2 weeks after their last budesonide pill. That is how we get a lot of our members.

I like to think of budesonide helps control the symptoms while we get the diet under control.
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Post by bubba »

Thanks Brandy!
I've been thinking of the Budesonide in this way also. I'm working hard on the diet end, but haven't been able to figure it out yet. I seem to be reacting to everything and I don't want/need to lose weight. Plus, I like to eat! :) I WILL get it figured out though. Thanks for your input!
Cathy
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Post by brandy »

Hi Cathy,

I just read your last post. My mother is celiac and I think celiac is a walk in the park compared to MC and what I went through.

A lot of folks on here have been able to get to remission through diet alone but this is a rough, rough disease and a lot
of folks have taken meds to help.

Have you tried cholestryamine? It may be cheaper than the budesonide and the cholestryamine works for a lot of us.

That said we've had Americans buy budesonide from an India pharmacy (cheapest--no scrip required) or through Canadian pharmacies (requires scrip but cheaper than US pharmacy).

Healing takes time. I was able to get to "ribbon stool" after about 4 months of diet and meditation. I went on
budesonide at that point due to my friends and employer kind of forcing me (weird I know)
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Post by bubba »

Brandy,

I completely agree that this is much more difficult that the Celiac was/is. I have not tried Cholestryamine. Reading about it in this forum is the first I have heard about it. I only received my diagnosis of Collagenous Colitis a week ago, so I have a lot to learn. My doc prescribed the Budesonide and suggested trying Imodium first to get the diarrhea under control. Budesonide if I don't have success with the Imodium. I will look into it more and may call my doc about it if I don't get approval of Budesonide. I also need to check with the pharmacy to find out how much the Budesonide is if I pay out of pocket. I'm actually quite sure I will be paying out of pocket regardless, I am just hoping the cost will go towards my deductible.
Are you still taking Budesonide Brandy? Or have you now been able to manage with diet alone?
Cathy
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