I am looking for others diagnosed with microscopic colitis

thank you, that is good news

I was just diagnosed with microscopic colitis in July at Mayo. I have been trying to get a diagnosis for 5 years at home. What are you doing for yours?

My mother has suffered from Lymphocytic Colitis since I was in kindergarten, I am now turning 31 years old. I have watched her suffer and see no end in the pain ever since. I have also witnessed her long time doctor resort to the use of morphine as a constipation aid when my mom decided that it was time for her to go back to work from being a full time stay at home mother to me. Between the severe diarrhea, unbearable stomach pain, and nausea that my mother has suffered with after giving birth to me, I can only imagine how helpless she feels as I feel just as helpless. My mother is the strongest woman that I know, and I have NEVER gone without as a child despite her condition. I just feel as if there must be a better way for my mother to deal with this. She is not one to go on to the internet to look for others suffering with the same condition. I feel as if it is the least that I can do to help her have the best quality of life that she deserves. I hope this post has not scared others away and I only want to gain knowledge of how to help my mom. Along the years of dealing with colitis she has gained a number of other health problems, however, I feel that if I start at the first problem I might be able to understand and be of more help to her.
Sincerely, Rinnie

I've had lymphocytic colitis for almost 20 years, and was on budesonide (for too long) until my skin started scraping off. I changed to colestipol some time ago. It does control symptoms unless I cheat and have alcohol (rare!). What I hate about it is being chained to a kitchen timer all day long, to leave 2-3 hours between it and my other medications and supplements. I can't hear the timer if my hearing aids are out or my roommate turns it off (it's annoying!) and forgets to tell me. I'm considering asking for one of the meds that might effect my immune system. It's questionable, though, since I've had cancer twice and was poisoned with chemicals 30 years ago, so my immune system is probably weak. I'm fully vaccinated for COVID-19, and did not have any side effects (which might also indicate a weak immune system). Does anyone know of any NEW, STATE-OF-THE-ART medication that will not effect the immune system, but can be taken at any time during the day without regard to other meds??? I would go to MAYO, but I'm hoping I won't have to travel so far! Thanks in advance for any alternatives you might know about.

Mine started right after I had a child as well

I was diagnosed with UC in 2012 and was flare free between 2013 and Oct 2018. I had a flare in Nov 2018 and have not been in remission since then. The only thing that keeps me symptom free is Hydrocordisone Enema and a strick diet. Everything from Predisone, 6-MP, Remicade, Entyvio has failed. My GI doc has prescribed Tofa now (Xeljanz)

I dont know if it will work or if I need to take the enema for the rest of my life. I am 46 and hoping to be in remission (which has eluded me for the last 3 years)

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.