I am looking for others diagnosed with microscopic colitis

Pepto

Hello @wom and welcome to Mayo Clinic Connect.

If you scroll up through the previous comments on this post, you will find it mentioned by @crankyyankee. You may also use this link to go there directly: https://connect.mayoclinic.org/discussion/microscopic-colitis-2ced1d/?pg=8#comment-640696

Do you suffer from microscopic colitis?

My husband recently had a colonoscopy and they discovered a mild case of ulcerative colitis. It was a surprise as he has none of the symptoms. The doctor (not from Mayo) wants to put him on 3.6 g daily of mesalamine. We think this is an aggressive step for a mild case of colitis with no symptoms. Are there other options? Is doing a colonoscopy more frequently an option? Taking medication daily going forward long term may have its risks too. Any comments and feedback is appreciated.

I was diagnosed two years ago with MC. Life has been a challenge...I was told it was an autoimmune disorder, but only given Budesonide no diet or other advice as the doctor thought it was a minor inconvenience...minor to him maybe, but changed my life! I tried the Auto Immune Protocol Diet for three months and can't say I saw much improvement. I have eliminated dairy, sugar, caffeine, gluten, and alcohol and still have flares that can last for days. I weaned off the budesonide and use Immodium or Lomtil to get through bad times. Then last December I developed Alopecia (confirmed by biopsies) which is also an autoimmune disorder. The doctor stated with one autoimmune disorder, I was 70% more likely to have another. I am 70 and Alopecia usually occurs in young children and young adults.

I also have MC and am working my way through diet changes but, like you, not seeing alot of change or help. Imodium, as far as I know, is a reasonable help and I am taking 2 per day right now with what I call 80% (good) results. I've done alot of research and don't think there are any harmful side effects for Imodium. I prefer the generic as it is much cheaper.

Hi @maryjos and @lbristow1 and welcome to Mayo Clinic Connect.

@maryjos You will see that I moved your comment to a discussion about different colitis problems. I did this so that you can connect with other members that may have experience with mesalamine.
You might also be interested in connecting with @dianagump who is using diet to control her UC.

@lbristow1, I see you have also eliminated several things from your diet to improve your symptoms. I am sorry that your doctor somewhat dismissed your MC. Mary's husband's doctor seems to want to provide extreme help and yours wants to take a less aggressive route. Maybe you two could switch! Just kidding.

...but, have either of you saught out for a second opinion about treatment options?

Thank you! What is the name of the group you moved message ? I appreciate your help. We are unsure of what to do.

Hi @maryjos, @amandaburnett merged your post into the Digestive Health group and in the Colitis – Microscopic/Lymphocytic/Ulcerative discussion so that you can read what other members have shared and post any questions you may have. If you see a members post and would like to comment or ask a question of the member, just click the REPLY button below their post. If you want to post a new separate question to all members following the discussion, scroll to the bottom of the page, type your question or comment and click the POST COMMENT button.

I was diagnosed with lymphcytic colitis about a year ago. I refused anything with steroids in it because of my age (72) and my osteoporosis. It comes and goes. I have no pain just immediate diarrhea. I have tried Pepto Bismol in the past and after a few days I was constipated. Now I am trying it for 3 months taking 2 pills 3X a day. So far today, it hasn't worked. I am down to 107lbs. My lipase is a little elevated at 154 but it was 215 a weeks ago. My amylase was 91 a few weeks ago. I have had it higher and see a gastroenterologist with Mayo. Soon to be referred to the Pancreatic Department in May to continue to follow up. I honestly don't know what is causing this colitis or how I got it or why it comes and goes! I work out twice a week with a Wellness coach. I'm even considering antidepressants because of the amount of stress I've been under. Any ideas would be helpful?

This is interesting…gastro dr recommended 2 Zenpep (40,000) with each meal, equaling 6 per day. It gave me fibrosing colonopathy and I was in agony with the cramping and diarrhea.
I stopped after the worst episode last Friday. Started over with the Zenpep ONCE before my evening meal. So far, so good!
The recommended dosage was WAY too strong is my best guess. I have a follow up appointment in 5 days and am curious to see what my dr has to say. I was diagnosed as having moderate to severe EPI and that I needed a strong dose to be able to digest my nutrition.
The weight loss continued and now I am down to 104. I’m only 62 inches tall and there is NO way I’m taking the recommended dose!
Anyone else had a similar experience?
I can live with the smaller dosage, but I can’t live with the agonizing cramping and diarrhea with the recommended dosage.