https://www.microscopiccolitisfoundation.org/
This organization offers much info on microscopic colitis, which is such a complex and frustrating disease to manage.

Does charcoal work?

Question: Can microcolitis cause constipation? When I was diagnosed, it was the opposite and the budesonide fixed it. Now, all of a sudden I'm having the opposite happen. Is this a relapse or something new?

Hi,
All I know is I had a relapse of diarrhea 5/5 to 5/21 and started Budesonide at a lower dose (I couldn't tolerate it before) 6mg. on 5/14 and then 5/21-5/25 had constipation. I read that yes it can be part of MC. I took Ducolax, 3 over 2 days and then the dam broke and so did my stomach aches. I'm starting to eat normally again and am not fatigued anymore. Best of luck to you.

Hi Again,
Now I'm dealing with constipation. Had for 4 days, cramping, etc, took 3 ducolax over 12 hours and then had a "normal" day. The next day back to constipation! Day 3 today. Took 3 ducolax again over the last 12 hours and have barely had success. Cramps, etc. I drink kefir every morning and green tea with optifiber. Doesn't seem to help. I'm still on Budesonide. Keep leaving messages with my GI doc and they don't get back to me. I think they may have too many patients. On top of that, went to urgent care yesterday and have UTI. Am on antibiotics now. Geez! Do I ever get a normal life again? I'm very discouraged.

I finally got called back and they said avoid ducolax and do Maalox instead. It doesn't have a stimulant. Good to know.

Hello everyone,
Diagnosed w/MC last July, health went downhill fast, down to 85 lbs and ended up w/PTSD...what a nightmare! I have been on 30mg Mirtazapine and 5mg Lexapro since January and that pulled me out of the PTSD. Mentally and emotionally am doing well, but had a flare a few weeks ago....trying to get it under control. I stopped all natural supplements (I was on a LOT) which helped, but stools still very soft w/occasional diarrhea. I am just taking D3, Magnesium Glycinate and Brain MD. Am sticking to a BRAT diet w/roasted chicken and well cooked carrots, squash, spinach, sweet potato and white rice. My gut likes these.

Been on Creon since last August and I tried weaning off of it slowly a few days ago. My gut said, "No!" I have an order for a fecal elastane test but I'm afraid to stop the Creon for 2 full days before the test for fear of dealing with a lot of diarrhea again. Has anyone experienced this?

My GI ordered Budesonide last summer but I never took it so it's still in my bathroom cabinet. I have read so many people's accounts of recovering quickly w/Budesonide but that the D returned once they stopped. Is this the general concensus here?

Thank yo for any comments, suggestions or opinions.

Hello all, I am a 66 yo female diagnosed with Lymphocytic colitis 10/2023. Previously diagnosed and treated for IBS-d for 10 years without relief. I became very sick 1/2023 with cramping, liquid stools 7-8 x day preventing me from leaving my home. My GE refused to do another colonoscopy convinced it was IBS-d. After months of this, incidental findings on CT of colon suspicious of inflammatory colitis my GE referred me to another GE in the group who did "difficult cases". Pathology was Microscopic Lymphocytic and started on Budesonide, 12 weeks. This quickly worked. Unfortunately, off Budesonide for 1-2 months I relapsed. I have relapsed 3 times, requiring Budesonide which agan worked. I asked for low dose Budesonide 3 mg/ day which stopped symptoms while on maintenance. My primary GE refuses to believe the pathology findings and I have lost trust in her management and those in practice
I have tried bile sequesrtants, diet therapy, stress reduction, pepto unhelpful. I am reluctant to try biologics due to poor efficacy and serious adverse effects and co existing medical conditions. I am asking for input, advice from the group or moderator. I am very depressed, fatiqued, isolated and family is non supportive so I thank you in advance.

Hello Everyone,
I just read all the letters and decided to join the discussion group. Lots of interesting things to read and share. I am an 85-year-old LOL in relatively good health except for osteoporosis, and microscopic colitis since Oct. 2023. I was diagnosed after 2 months of diarrhea up to 10 x day, miserable life and lost 12 pounds.
I am an active person. I like to lead kayak trips (but not with 10 diarrhea/day!) in summer and hikes in winter. I was put on Budesonide 3 mg (or more if needed) a day. Like a miracle! It worked as soon as my colon filled up again after the colonoscopy. I started on BRAT diet, then started adding things like roasted chicken, fish, scrambled eggs, tuna with mayo, and things went well.
I had occasional flares when I did too much food or tried commercial soups and frozen dinners. I am doing very well now if I stick to real food without additives. I love fresh fish (I live on Cape Cod) and seafood. I do occasionally get constipation which I hate worse than diarrhea!
After my colonoscopy I started keeping track of my poops, using the BRISTOL STOOL SCALE. Have any of you used this? East to look up online and print. Someone must have done some creepy research, but it is very helpful: there are 7 Types of stool starting with Type 1 (difficult to pass, hard pellets) all the way to Type 7 (brown water, no solids, only liquid). Each are illustrated with pictures. I kept a daily record in my bathroom of all such events on a clipboard I hid behind my bath towel. My best days were Type 4 (smooth sausage and easy to pass).
I am running out of space I think - see you all later.

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.