1. < Inflammatory Bowel Disease (IBD)
Profile picture for bobthebuilder54

Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for billjudis
billjudis | @billjudis | Jun 16, 2022
In reply to @grannydee "The mucus only happens when I take the Zenpep with every meal. I now only take..." + (show)
Profile picture for grannydee @grannydee

The mucus only happens when I take the Zenpep with every meal.
I now only take one Zenpep (40,000) with my evening meal.
The mucus is literally the lining of my colon and the painful cramping is next level difficult and no way to live.
I can live with 5-6 trips to the bathroom a day…
I can’t live with running to the bathroom 15 times a day…
There is no cure, just nutritional management and Zenpep in a dose that enables me to have as normal a life as is possible.
Anyone relate???

Jump to this post

I feel for you! I was diagnosed with c-diff (intestinal infection I had for 5 months) and moderate pancreatic ensyme insuffiency. They prescribed Zenpep but I waited and they did a stool sample 2 weeks later and c-diff was gone and pancreatic enzymes were back to normal. My GI doctor told me I didn't need Zenpep and had me follow up with his NP because I still had diarrhea and she got angry with me and said I needed to follow the doctors orders and take the Zenpep! I reported her and did not take the Zenpep. So bizzarre...I am so weak from the pain and diarrhea and get confused with all of this stuff!

REPLY
Profile picture for carolyne
carolyne | @carolyne | Jun 16, 2022
In reply to @billjudis "I can relate to this! I was diagnosed with microscopic colitis 15-20 years ago and Prednisone..." + (show)
Profile picture for billjudis @billjudis

I can relate to this! I was diagnosed with microscopic colitis 15-20 years ago and Prednisone was the ONLY thing that helped. 5 years later I went on a Gluten Free diet and it cleared up!
Now I have major digestive issues: Hiatal Hernia surgery last February (my stomach was literally in diaphram) diagnosed with gastroparesis in May which required another stomach surgery in October. Began to get really sick afterwards and at first they diagnosed dumping syndrome, and 5 months later I finally requested a stool sample and I had C-Diffe all the while...since then I still have problems recurrent diarrhea but now it is getting worse and seems different than before. I mentioned Microscopic colitis and they almost laughed at me (the NP was very rude about it). Seeing a new GI doc soon! Wish me luck!

Jump to this post

Yes, good luck, a good gastro dr. can find it with a colonoscopy, just need to take a biopsy and view under a microscope. Let me know what you find out.

REPLY
Profile picture for fdixon63
fdixon63 | @fdixon63 | Jun 17, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

Jump to this post

I have a very long history of symptoms like colitis. I had a colonoscopy six months ago and biopsies revealed collagenous colitis. I was prescribed budesonide for three months--reducing the amount every month until finished. It made a huge difference in my ?diarrhea-type episodes, consistency of BM's... I was thrilled. It has been about 2 1/2 months since I finished the budesonide. I still have the occasional "flares" which depend on what I eat but overall the urgency is much less. Changing doctors is what has helped the most.

REPLY
1 reply
Profile picture for longslowprogress
longslowprogress | @longslowprogress | Jun 17, 2022
In reply to @billjudis "I can relate to this! I was diagnosed with microscopic colitis 15-20 years ago and Prednisone..." + (show)
Profile picture for billjudis @billjudis

I can relate to this! I was diagnosed with microscopic colitis 15-20 years ago and Prednisone was the ONLY thing that helped. 5 years later I went on a Gluten Free diet and it cleared up!
Now I have major digestive issues: Hiatal Hernia surgery last February (my stomach was literally in diaphram) diagnosed with gastroparesis in May which required another stomach surgery in October. Began to get really sick afterwards and at first they diagnosed dumping syndrome, and 5 months later I finally requested a stool sample and I had C-Diffe all the while...since then I still have problems recurrent diarrhea but now it is getting worse and seems different than before. I mentioned Microscopic colitis and they almost laughed at me (the NP was very rude about it). Seeing a new GI doc soon! Wish me luck!

Jump to this post

Unless someone has actually lived with microscopic colitis, they have absolutely no concept of or appreciation for the impact of this condition has on ones life. I have had it for 23 years. Budesonide could only be taken for 9 weeks. I would have thought once the inflammation was “healed” My elimination would have returned to normal. But even with rigid and strict dietary changes, I am back to full blown MC daily and nightly. Have tried the Budesonide route twice over a period of years and am considering it again, but very hesitant because it provides no lasting positive outcomes. I have had additional testing done. Thankfully there are no other medically identified digestive challenges. My best outcome so far is the Paleo diet. Not my preference, but I do get some relief. Also know your own trigger foods. What I eat does seem to matter a LOT!

REPLY
1 reply
Profile picture for longslowprogress
longslowprogress | @longslowprogress | Jun 17, 2022
In reply to @grannydee "This is interesting…gastro dr recommended 2 Zenpep (40,000) with each meal, equaling 6 per day. It..." + (show)
Profile picture for grannydee @grannydee

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.

Jump to this post

ZenPep did not work for me. I tried several weeks on Creon With samples given to me by my doctor. Now I have a prescription for Creon, and will try it for several months. Initially, it seemed to help a lot. I have EPI found after taking a GiMap test. My amalyse level was 33 and my lipase and protease were also extremely low.
I hope the Creon is part of the MC solution, the Creon should definitely improve my ability to digest and derive the nutrients I need from my very very limited diet.

Wayne Pesky’s book and the blog are helpful and offer deep insight into MC.

REPLY
Profile picture for carolyne
carolyne | @carolyne | Jun 17, 2022
In reply to @fdixon63 "I have a very long history of symptoms like colitis. I had a colonoscopy six months..." + (show)
Profile picture for fdixon63 @fdixon63

I have a very long history of symptoms like colitis. I had a colonoscopy six months ago and biopsies revealed collagenous colitis. I was prescribed budesonide for three months--reducing the amount every month until finished. It made a huge difference in my ?diarrhea-type episodes, consistency of BM's... I was thrilled. It has been about 2 1/2 months since I finished the budesonide. I still have the occasional "flares" which depend on what I eat but overall the urgency is much less. Changing doctors is what has helped the most.

Jump to this post

Great, Budesonide worked on me for awhile then all my symptoms returned, even worse. Hopefully yours will stay in remission. I am troubled now by cramping and crippling fatigue. It could be due to the infusion therapy, not sure. Anyway, I just continue to forge ahead, don't know what else to do.

REPLY
Profile picture for carolyne
carolyne | @carolyne | Jun 17, 2022
In reply to @longslowprogress "Unless someone has actually lived with microscopic colitis, they have absolutely no concept of or appreciation..." + (show)
Profile picture for longslowprogress @longslowprogress

Unless someone has actually lived with microscopic colitis, they have absolutely no concept of or appreciation for the impact of this condition has on ones life. I have had it for 23 years. Budesonide could only be taken for 9 weeks. I would have thought once the inflammation was “healed” My elimination would have returned to normal. But even with rigid and strict dietary changes, I am back to full blown MC daily and nightly. Have tried the Budesonide route twice over a period of years and am considering it again, but very hesitant because it provides no lasting positive outcomes. I have had additional testing done. Thankfully there are no other medically identified digestive challenges. My best outcome so far is the Paleo diet. Not my preference, but I do get some relief. Also know your own trigger foods. What I eat does seem to matter a LOT!

Jump to this post

I totally agree, makes no difference what I eat, a piece of celery or a large hamburger, results are the same. The only thing that's helped is the infusion therapy in controlling the diarrhea. Still suffer from severe cramping 24/7 and fatigued all the time. I've lost a lot of weight, over 50 lbs and I'm a small woman to begin with. Don't know at what point weight loss becomes dangerous.

REPLY
1 reply
Profile picture for brendaharvey
brendaharvey | @brendaharvey | Jun 17, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

Jump to this post

Does this look like it would be ok as a veggie substitute for me with
Gastroparesis!

REPLY
Profile picture for longslowprogress
longslowprogress | @longslowprogress | Jun 19, 2022
In reply to @carolyne "I totally agree, makes no difference what I eat, a piece of celery or a large..." + (show)
Profile picture for carolyne @carolyne

I totally agree, makes no difference what I eat, a piece of celery or a large hamburger, results are the same. The only thing that's helped is the infusion therapy in controlling the diarrhea. Still suffer from severe cramping 24/7 and fatigued all the time. I've lost a lot of weight, over 50 lbs and I'm a small woman to begin with. Don't know at what point weight loss becomes dangerous.

Jump to this post

What is infusion therapy for MC?

So sorry to learn of your situation. Cannot answer question re wt loss.
I eat no processed foods and no grains. Limited eggs, no soy.
I have lost weight also, and am approaching ideal for my small frame. I hope wt decline stabilizes @ some point.

REPLY
Profile picture for carolyne
carolyne | @carolyne | Jun 19, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

Jump to this post

The infusion therapy I receive is actually for Krones (sp) Disease and IBS but none of the medications I took could take care of my symptoms. It's Entyvio. It has relieved my diarrhea but still cramping, crippling fatigue, no appetite and continued weight loss. I had to wait for approval from Medicare before I could receive, the infusions cost $42,000 a year, too rich for my blood to pay. I get my 4th infusion tomorrow. Keep me posted as to how you are doing.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.