Anybody diagnosed with microscopic colitis?

Hello @trying1975 and welcome to Mayo Clinic Connect. It is great to hear that you have found that diet and hydrocortisone enema keeps you symptom free.

Have you ever discussed this regimen with your doctor to see how you might be able to try to reduce the enema frequency as a start?

Yes, I discussed it with my GI doctor. If I reduce enema frequency to "once in two days", the symptoms (such as mucus) return immediately and fecal calpro goes up. In effect, it seems like (with diet & enema) I am only symptom-free (but not in remission). Hence the plan is to switch to Xeljanz and see if I achieve remission.

I was diagnosed with MC in 2021 and my GI doctor put me on Budesonide (9 mg) I have completed taking 2 months of this medicine but my condition has not improved. Also my GI doctor does not recommend Continuing taking this medicine due to its adverse side effects. He recommends change of diet.
Does any one has advice!

I was diagnosed with MC early 2021 as well. Change of diet is not an option, it is a necessity. While your lower G.I. tract is healing, it cannot handle the foods that irritate it. Irritating foods must be eliminated and then can be very slowly re-introduced in the months following relief of symptoms.

Here is an oversimplification of what needs to happen to relieve your symptoms and eliminate the MC:

VEGGIES- greens: NO RAW, only fully cooked. Potatoes and puréed squashes are OK No tomatoes or onions.
FRUITS - you may eat bananas, applesauce or applesauce pouches that contain other cooked fruits, then you may slowly re-introduce melons. No citrus fruits! Avocados are ok!!
MEATS - Low fat, no spices, broiled or baked only
GRAINS - Cream of wheat, oatmeal, lower fiber cereals, pasta or white breads are OK. Higher fiber breads or greens may be introduced once symptoms have disappeared. Plane crackers, saltines, plain goldfish, Parmesan or cheddar goldfish, Cheez-Its, animal crackers, etc are OK.
NO DAIRY PERIOD. You may drink almond or oat milk. As for cheese, yogurt, etc., there are plenty of no dairy alternatives.
COFFEE, TEA, HOT drinks: The best bets are decaffeinated tea OR a latte with dairy free alternative milk and decaffeinated

NO-NOs:
NO SPICES,
NO EXTRA FATS or FRIED FOODS
NO ACIDIC FOODS
NO ALCOHOL
NO SELTZER WATER or CARBONATED DRINKS
NO CHOCOLATE
NO COFFEE, even decaf
😞

I did use grated Parmesan cheese and cinnamon/nutmeg for spices, I completely cut out garlic, onions and most of the other spices that I love. I slowly re-introduced everything and have been mostly symptom free since June.

Basically you have to eat bland, easy to digest Foods for a few months. My normal diet is high in uncooked greens, fibers, nuts, dark chocolate, and of course dark red wine at least once a week! So it was extremely hard for me to do this but eliminating the MC was worth the work. also keep in mind that long-term irritation of your G.I. tract can cause other diseases and potentially lead to cancer as well.

My A1C rose significantly because of this but now it is back on the way down.

If you are interested, I am happy to provide you with information regarding my experience and that I had as well as two others with the same diagnosis.

I just shared this comment with someone else in this thread. I hope it is helpful to you, good luck!

I was diagnosed with MC early 2021 as well. Change of diet is not an option, it is a necessity. While your lower G.I. tract is healing, it cannot handle the foods that irritate it. Irritating foods must be eliminated and then can be very slowly re-introduced in the months following relief of symptoms.

Here is an oversimplification of what needs to happen to relieve your symptoms and eliminate the MC:

VEGGIES- greens: NO RAW, only fully cooked. Potatoes and puréed squashes are OK No tomatoes or onions.
FRUITS - you may eat bananas, applesauce or applesauce pouches that contain other cooked fruits, then you may slowly re-introduce melons. No citrus fruits! Avocados are ok!!
MEATS - Low fat, no spices, broiled or baked only
GRAINS - Cream of wheat, oatmeal, lower fiber cereals, pasta or white breads are OK. Higher fiber breads or greens may be introduced once symptoms have disappeared. Plane crackers, saltines, plain goldfish, Parmesan or cheddar goldfish, Cheez-Its, animal crackers, etc are OK.
NO DAIRY PERIOD. You may drink almond or oat milk. As for cheese, yogurt, etc., there are plenty of no dairy alternatives.
COFFEE, TEA, HOT drinks: The best bets are decaffeinated tea OR a latte with dairy free alternative milk and decaffeinated

NO-NOs:
NO SPICES,
NO EXTRA FATS or FRIED FOODS
NO ACIDIC FOODS
NO ALCOHOL
NO SELTZER WATER
NO CHOCOLATE
NO COFFEE, even decaf
😞

I did use grated Parmesan cheese and cinnamon/nutmeg for spices, I completely cut out garlic, onions and most of the other spices that I love. I slowly re-introduced everything and have been mostly symptom free since June.

Basically you have to eat bland, easy to digest Foods for a few months. My normal diet is high in uncooked greens, fibers, nuts, dark chocolate, and of course dark red wine at least once a week! So it was extremely hard for me to do this but eliminating the MC was worth the work. also keep in mind that long-term irritation of your G.I. tract can cause other diseases and potentially lead to cancer as well.

My A1C rose significantly because of this but now it is back on the way down.

If you are interested, I am happy to provide you with additional information regarding my experience and as well as two others with the same diagnosis. ❤️

Thank you for this! I’ve struggled with LC for some time working with some of the best providers. Repeated scripts of Budesonide with recurring symptoms every time. NEVER has diet been mentioned much less addressed. Your plan is the first comprehensive I’ve seen. I have read that buttermilk, sour dough bread, and other probiotic foods are helpful in restoring healthy gut.

You will know what works based on your symptoms. Repeated steroid prescriptions is just not good, even low dose.

Two Questions…

Was the budesonide tapered over approx 4 mos?

How was diagnosis confirmed? Via a biopsy?

Also, I forgot… No artificial sweeteners. You also may want to try Metamucil (sp?) or a similar product with/without a probiotic. If you try one of these fiber supplements, make sure you drink plenty of water as they can have a constipating effect if there is not enough fluid intake.

Let me know how you make out, all of these things work for me, I hope they work for you!

Thanks again! On another post you asked about diagnosis. Biopsies during colonoscopy; Budesonide was tapered. It’s very helpful to share info! I’m interested as to how you arrived at your information?

I also have this along with other digestive issues. Book by wayne persky microscopic colitis is full of good info. Diet seems to never be addressed by gastrointestinal docs.