1. < Inflammatory Bowel Disease (IBD)
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Microscopic Colitis

Posted by tlfrench @tlfrench, Nov 1, 2021

Just recently diagnosed
Have Hypothyroidism
Showing some positive for RA
Suffered years with CDiff
Need any help feedback anyone can give please

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Profile picture for teresadean
teresadean | @teresadean | Jun 10, 2025
In reply to @ymoreno2 "To the person who posted that charcoal pills stopped diarrhea, a thousand thanks. I was diagnosed..." + (show)
Profile picture for ymoreno2 @ymoreno2

To the person who posted that charcoal pills stopped diarrhea, a thousand thanks.
I was diagnosed with microscopic colitis. I took Budesonide for a little over two months, and it was wonderful. After about a month after stopping, I started getting diarrhea and cramping again. After two months the diarrhea was every day. The Imodium never helped. After seeing the post, I added two charcoal pills before meals and no more diarrhea. Thanks for posting.

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@pichulita
I don’t know how my message doubled it’s self….. But THANK YOU for your response! It seems all the Drs I have seen don’t know what to do and they don’t know what to do. I was diagnosed in 2022 and Dr seems to hardly understand…..
Before the MC suddenly hit in August 2022 I am THANKFUL I had put on some extra weight. I have lost 55 pounds and I pray I don’t loose any more. If I do…. I suspect I will be in the hospital and little they will know to do or possibly that might be the only way I will get nutrition help. It’s hard to thrive when we lack nutrients that are obvious to everyone aside the Drs we see.
And most are hard to get an appointment with. I tried an appointment with the Mayo Clinic but was denied as my insurance is out of network…..
Good luck to you. You found hope….. surely I will too.
Sincerely
Teresa

REPLY
2 replies
Profile picture for pichulita
pichulita | @pichulita | Jun 10, 2025
In reply to @teresadean "@pichulita I don’t know how my message doubled it’s self….. But THANK YOU for your response!..." + (show)
Profile picture for teresadean @teresadean

@pichulita
I don’t know how my message doubled it’s self….. But THANK YOU for your response! It seems all the Drs I have seen don’t know what to do and they don’t know what to do. I was diagnosed in 2022 and Dr seems to hardly understand…..
Before the MC suddenly hit in August 2022 I am THANKFUL I had put on some extra weight. I have lost 55 pounds and I pray I don’t loose any more. If I do…. I suspect I will be in the hospital and little they will know to do or possibly that might be the only way I will get nutrition help. It’s hard to thrive when we lack nutrients that are obvious to everyone aside the Drs we see.
And most are hard to get an appointment with. I tried an appointment with the Mayo Clinic but was denied as my insurance is out of network…..
Good luck to you. You found hope….. surely I will too.
Sincerely
Teresa

Jump to this post

Something you need to know is that insurances do not usually cover functional doctors, but functional doctors get to the bottom of what's causing illnesses by doing a lot of testing.

I was doing well and then a flare up reared it's ugly head right after Mother's Day. I panicked, but my wonderful husband and daughter talked me down and kept telling me it was just a slight blip and I would be fine. They were right.

I think what might be helping me is that I take a shake every morning w/the following:
non dairy yogurt, homemade kefir, sourghum flour, chia seeds, collagen peptides, a little kombucha and a couple of powdered supplements from my functional doctor.
I also take 112.5 billion Visbiome probiotic daily and 150 billion Akkermansia every other day.

This may sound kooky but I have a medical intuitive who is very good and she told me that my body was very deficient in cell salts and trace minerals and told me which ones to get. (it's important to get the right ones) My functional med doc agreed.

If you want something to help calm you, you may want to look into Brain Md Happy Saffron Plus which is put out by a very well respected neuroscientist. It's proven to be as good as an anti depressant for some people. The dosage is 3 a day but since I"m very sensitive to supplements and meds, I take 2 a day and it helps (along w/2 antidepressants.....the MC led me down a horrific hole and I ended up w/PTSD).

I don't eat any processed foods or dairy and maintain a very low sugar count daily. Another biggie for a lot of people (and they probably don't know it) is that they may be sensitive to gluten. I stopped gluten about 8 years ago and it was much, much better. I rarely miss it anymore. Gluten can be very poisonous to some people. If you eat gluten and sugar, try getting off of them for 2-3 weeks and see how you feel.

Thank you for responding to my post....so comforting that I'm living w/MC with a whole lot of other people.

Have a wonderful day!

REPLY
Profile picture for pichulita
pichulita | @pichulita | Jun 10, 2025
In reply to @teresadean "@pichulita I don’t know how my message doubled it’s self….. But THANK YOU for your response!..." + (show)
Profile picture for teresadean @teresadean

@pichulita
I don’t know how my message doubled it’s self….. But THANK YOU for your response! It seems all the Drs I have seen don’t know what to do and they don’t know what to do. I was diagnosed in 2022 and Dr seems to hardly understand…..
Before the MC suddenly hit in August 2022 I am THANKFUL I had put on some extra weight. I have lost 55 pounds and I pray I don’t loose any more. If I do…. I suspect I will be in the hospital and little they will know to do or possibly that might be the only way I will get nutrition help. It’s hard to thrive when we lack nutrients that are obvious to everyone aside the Drs we see.
And most are hard to get an appointment with. I tried an appointment with the Mayo Clinic but was denied as my insurance is out of network…..
Good luck to you. You found hope….. surely I will too.
Sincerely
Teresa

Jump to this post

Good luck to you too, Teresa. BTW, my name is Gracia. Sending you a warm hug

REPLY
Profile picture for teresadean
teresadean | @teresadean | Jun 10, 2025
In reply to @ymoreno2 "To the person who posted that charcoal pills stopped diarrhea, a thousand thanks. I was diagnosed..." + (show)
Profile picture for ymoreno2 @ymoreno2

To the person who posted that charcoal pills stopped diarrhea, a thousand thanks.
I was diagnosed with microscopic colitis. I took Budesonide for a little over two months, and it was wonderful. After about a month after stopping, I started getting diarrhea and cramping again. After two months the diarrhea was every day. The Imodium never helped. After seeing the post, I added two charcoal pills before meals and no more diarrhea. Thanks for posting.

Jump to this post

I feel I am getting PTSD or certainly extreme anxiety!!!! I don’t understand why MC is so underrated by GI specialists and PCPs when they have eyes and scales and see we are loosing weight so much!!!!!
I eat gluten free/including soy of course ….. plus no dairy, no eggs (sensitivities). I panic if I seem to think a flare is in the making!!!!! Oh me Oh my……
Thank you friend….
Teresa

REPLY
1 reply
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pichulita | @pichulita | Jun 11, 2025
In reply to @teresadean "I feel I am getting PTSD or certainly extreme anxiety!!!! I don’t understand why MC is..." + (show)
Profile picture for teresadean @teresadean

I feel I am getting PTSD or certainly extreme anxiety!!!! I don’t understand why MC is so underrated by GI specialists and PCPs when they have eyes and scales and see we are loosing weight so much!!!!!
I eat gluten free/including soy of course ….. plus no dairy, no eggs (sensitivities). I panic if I seem to think a flare is in the making!!!!! Oh me Oh my……
Thank you friend….
Teresa

Jump to this post

Teresadean,
If you think you may be slipping into PTSD, please, please, please see a good psychiatrist that can prescribe something for you. I would remind you of the Brain MD Happy Saffron Plus that just might help you......doesn't hurt to try it.

REPLY
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margot6425 | @margot6425 | Jun 12, 2025
In reply to @mollygirl3179 "Good morning, Margot! Thanks for the food list. It's helpful to see what others can tolerate...." + (show)
Profile picture for mollygirl3179 @mollygirl3179

Good morning, Margot! Thanks for the food list. It's helpful to see what others can tolerate.
My diet has been more on the carnavore side because vegetables and fruit seem to tear me up. I miss my salads!
If I can manage to get to the point of remission, my gastro wants me to stay on 3 mg budesonide per day. The good news is that after all these months, I'm starting to have some good days. There is hope! (But last night I had a setback, so we'll see where it goes)

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Hi Molly,
One thing I forgot to tell you I can eat (I miss salads too). If I have a grilled cheese sandwich, I put several slices of tomato inside it and perhaps the heating of the tomato makes it OK. No problem with a sort-of cooked tomato!
Margot

REPLY
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free73kja | @free73kja | Jun 15, 2025
In reply to @ymoreno2 "To the person who posted that charcoal pills stopped diarrhea, a thousand thanks. I was diagnosed..." + (show)
Profile picture for ymoreno2 @ymoreno2

To the person who posted that charcoal pills stopped diarrhea, a thousand thanks.
I was diagnosed with microscopic colitis. I took Budesonide for a little over two months, and it was wonderful. After about a month after stopping, I started getting diarrhea and cramping again. After two months the diarrhea was every day. The Imodium never helped. After seeing the post, I added two charcoal pills before meals and no more diarrhea. Thanks for posting.

Jump to this post

I'm sad and shocked to see an obituary of a 28 year old female in Omaha, who passed from complications of ulcerative colitis.
May she rest in peace, now.

REPLY
Profile picture for free73kja
free73kja | @free73kja | Jun 16, 2025
In reply to @ymoreno2 "To the person who posted that charcoal pills stopped diarrhea, a thousand thanks. I was diagnosed..." + (show)
Profile picture for ymoreno2 @ymoreno2

To the person who posted that charcoal pills stopped diarrhea, a thousand thanks.
I was diagnosed with microscopic colitis. I took Budesonide for a little over two months, and it was wonderful. After about a month after stopping, I started getting diarrhea and cramping again. After two months the diarrhea was every day. The Imodium never helped. After seeing the post, I added two charcoal pills before meals and no more diarrhea. Thanks for posting.

Jump to this post

Thank you Ann
I have microscopic colitis, which is most similar, but Im 74, whereas she was just starting her life and recent marriage.
So sad!!

REPLY
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margot6425 | @margot6425 | Jun 23, 2025
In reply to @sarahpa "I am 68 and was diagnosed with collagenous colitis 5 1/2 years ago. Was put on..." + (show)
Profile picture for sarahpa @sarahpa

I am 68 and was diagnosed with collagenous colitis 5 1/2 years ago. Was put on Budesonide which helped a lot. Did the gradual taper from 9mg to 6mg to 3mg and then none. Did ok for a couple of weeks or so but relapsed and did the whole routine again with an even longer taper. Relapsed again and have been on 3 mg daily ever since.
Have read that long-term use is ok, but wish I could get off it completely. My gastro dr is pleased with my status and doesn't want to mess with the status quo. She said if you go off it and then go back on, it might not be as effective. I did some research and found that stated - the efficacy can decrease.
I am wondering if anyone has experience with going off Budesonide and then back on again, and are there other long-term Budesonide users out there. I have not noticed any concerning side-effects while using it.

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Hi Sarah,
I guess I am a Long-term Budesonide user.
I developed frequent diarrhea about 2 years ago, had a colonoscopy, was diagnosed with microscopic colitis (October 2023) and was put on Budesonide 3 mg daily. It was amazing, and I had almost immediate relief. I have been on this same dose daily since that time. I have occasional short term flares (1 - 2 days) but recover quickly. I usually have 1 BM in the morning, normal type, and am free to live a bathroom-free day after that. The only side-effect I have is some bruise-type red areas like a bruise, but without any pain, on my arms. I was told this was because Budesonide is a prednisone. Since it does not bother me, I have not tried to get off B. but just live with it. Margot (85 yo F)

REPLY
2 replies
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sarahpa | @sarahpa | Jun 23, 2025
In reply to @margot6425 "Hi Sarah, I guess I am a Long-term Budesonide user. I developed frequent diarrhea about 2..." + (show)
Profile picture for margot6425 @margot6425

Hi Sarah,
I guess I am a Long-term Budesonide user.
I developed frequent diarrhea about 2 years ago, had a colonoscopy, was diagnosed with microscopic colitis (October 2023) and was put on Budesonide 3 mg daily. It was amazing, and I had almost immediate relief. I have been on this same dose daily since that time. I have occasional short term flares (1 - 2 days) but recover quickly. I usually have 1 BM in the morning, normal type, and am free to live a bathroom-free day after that. The only side-effect I have is some bruise-type red areas like a bruise, but without any pain, on my arms. I was told this was because Budesonide is a prednisone. Since it does not bother me, I have not tried to get off B. but just live with it. Margot (85 yo F)

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Thanks Margot and to others who replied. Sorry to hear about the "bruising". That is something I have not experienced.
I guess at this point, I have no reason to get off B. I wish I could go back to life without MC, but when I hear other's accounts of their struggles, I realize for the most part I am stable and don't really want to mess with the current status quo.
I hope you continue to do as well as you are doing!

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