Microscopic Colitis

Thank you for your response. I will double check with my GI about stopping the Creon before retesting. As for the Budesonide, I will also check with my GI about maybe trying it. I could use all the encouragement I can get.

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.

Hi, @lss111 - sounds like you have been through many years of cramping and liquid stools, trying to find an answer. You've tried a number of treatments, too. Congratulations to you for not giving up and persisting in finding answers.

Feeling isolated and depressed is a tough way to live. It is worse when family are nonsupportive or uninformed, leading to misunderstandings.

Will you at this point be moving to the care of the doctor who does "difficult cases" and to whom you were referred by your primary GE? Was continuing you on low-dose budesonide approved? Are you slated for further testing or any further treatment beyond the budesonide?

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.

Hi @margot6425 , and welcome to Mayo Clinic Connect. Thank you for providing a summary of your experience through diagnosis and finding therapy that works for you. Short of not having to deal with osteoporosis and microscopic colitis…success! I hope you are back to leading kayak trips.

It sounds like having a colonoscopy was the reset you needed, and have really focused on food as medicine since (and being active). I love it!

Do you mind sharing, what brought you to Connect?

Your experience is very similar to mine - I was diagnosed in October 2023 also and have had great results with Budesonide. If I eat too much, or too much of things that are hard for me to digest, I get some diarrhea but otherwise I'm doing well. I also track my bms with the Bristol Stool scale which my GI appreciates when I see her and can report exactly how I have been doing. I'm 70 and very active and intend to remain so for as long as possible!

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.

I have been on and off Budesonide for over 24 years with microscopic colitis. Typically I'd get a flare every two years. For most of that time the effectiveness did not decrease when I went off and on. I was on the 9mg for 2 weeks, 6 mg for 2 weeks, then 3 mg for 2 weeks, and it worked.

However, during the last couple years I've been experiencing more frequent flares and the Budesonide has lost it's effectiveness. I've been on 9mg per day since January with little relief, and it's frustrating and worrisome. So yes, it appears Budesonide can lose it's effectiveness.

My doctors (3) also said, don’t worry, you can be on B for the rest of your life. However, there is not a single clinical trial supporting that claim. The longest trial I could find was one year. In my case, I had a 12% bone density loss in two years on a very low maintenance dose (1.5mg). I am now off completely thanks to a gluten free plant based diet. Don’t give up. Find the root cause. Try a functional doctor. Keep searching!

Hi Deb
Thank you for your reply to my first letter. It is good to know that someone else has had a good response to Budesonide. You are the first person to say they are using the Bristol Stool chart. I find it very helpful, and so does my GI Doc. How much Budesonide to you take daily? I take 3 mg. daily and have never taken more than that. Keep up the good active life! I am 85 and just led a kayak trip 2 days ago - so much fun and good exercise!
Margot