Hello,
I am reaching out to you because I am desperate to find a solution for my stomach related (and only recently diagnosed microscopic colitis). I have been trying to find solutions for 30 years.
Please could you recommend something, or someone I can talk to?
I am 59 years old, living in South Africa.
In 2000 I was diagnosed with IBS. I have had stomach ulcers for 40 years. And my stomach goes from constipation to severe diarrhea.
I have had a Hiatus Hernia for 15 years along with acid reflux. On and off Topzo as treatment. And constant stomach pain all the time.
September 2016 – Jan 2017
Severe diarrhea – every day, all day. And I was barely eating (this made no difference). No doctor could figure out what the underlying cause of this was. I went to see many doctors, had many test, took many different types of medication and nothing worked. One medication each doctor prescribed was Imodium.
Then the symptoms stopped, only to flare up again, this time it lasted 6 weeks. Then stopped again.
September 2017 – October 2017
Still seeing more doctors – but no real diagnosis.
November 2019
I had a biopsy done of my colon – the conclusion was microscopic colitis.
The prescribed treatment was Entocord for 4 months:
9mg – 2 months
6mg – 1 month
3mg – 1 month
The course of Entocord was finished on 25.02.2020 and on 09.03.2020 the severe diarrhea returned.
I started another course of Entocord 6mg on 18.03.2020 and am supposed to see the specialist again on 21.04.2020, but due to lockdown this wont be possible.
None of the doctors I ever visited recommended any specific diets, I have just read about many different diets on the internet, and have tried many elimination diets etc etc.
Tried the FODMAP diet 3 times for 6 months at a time, but there was no significant changes.
Gluten and meat free diet for over 14 years now.
And the past 6 weeks – dairy free too.
Does this sound like any of you...do have any tips or super secrets of something I can try? I would be so so grateful, even just to speak with you.
Totally desperate.
What works? How can I live "normally" again?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jen,
Welcome to the forum.
I have two questions for you:
1. What is the scientific name of Topzo? We don't have it in the US. Understand that some of the acid reflux meds will prevent us
from healing our MC and going into remission?
2. Does the budesonide work when you are on it?
Tips secrets you requested?
1. Buy Tex's book. Link is in the top corner. It is way worth it.
2. Click on Microscopic Colitis Foundation link. It is top middle. Read all of the newsletters on the foundation.
3. If the budesonide works you may need to be on it longer while you heal. Think 6 -7 -8- 9 months or maybe a little more.
We recommend a very long slow taper when you get off of it. Six weeks 1 pill every other day. Six weeks one pill every third day etc. Those who take a long slow taper at the end show more success getting off. Listen to your body on when to step down to lower doses. Don't do any step downs until you have solid stool consistently. Let your body be the guide rather than your doctor.
Example--4 weeks at 3, you might need 2 or 3 months at 2 pills, 2 or 3 months at 1 pill, and then the slow taper off.
4. Gabes recommended diet is probably the best. I'll put a link on. Understand we all are slightly different.
5. Read everything you can on the forum. I believe it is the best resource anywhere.
Let me look for Gabes suggested diet.
Welcome to the forum.
I have two questions for you:
1. What is the scientific name of Topzo? We don't have it in the US. Understand that some of the acid reflux meds will prevent us
from healing our MC and going into remission?
2. Does the budesonide work when you are on it?
Tips secrets you requested?
1. Buy Tex's book. Link is in the top corner. It is way worth it.
2. Click on Microscopic Colitis Foundation link. It is top middle. Read all of the newsletters on the foundation.
3. If the budesonide works you may need to be on it longer while you heal. Think 6 -7 -8- 9 months or maybe a little more.
We recommend a very long slow taper when you get off of it. Six weeks 1 pill every other day. Six weeks one pill every third day etc. Those who take a long slow taper at the end show more success getting off. Listen to your body on when to step down to lower doses. Don't do any step downs until you have solid stool consistently. Let your body be the guide rather than your doctor.
Example--4 weeks at 3, you might need 2 or 3 months at 2 pills, 2 or 3 months at 1 pill, and then the slow taper off.
4. Gabes recommended diet is probably the best. I'll put a link on. Understand we all are slightly different.
5. Read everything you can on the forum. I believe it is the best resource anywhere.
Let me look for Gabes suggested diet.
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328
Gabes suggested eating plan. She is a longterm member who lives in Australia.
Gabes suggested eating plan. She is a longterm member who lives in Australia.
Tex's (Wayne's) book. https://www.amazon.com/Microscopic-Coli ... 1732079234
https://www.microscopiccolitisfoundatio ... etter.html
Foundation newsletters are on the right. All are worth reading. Sign up for the newsletter.
Foundation newsletters are on the right. All are worth reading. Sign up for the newsletter.
Hi Jen,
Welcome to the group. Yes, that sounds like most of us, when we first came here. Unfortunately the medical treatment is only temporary. 85 % of MC patients relapse after the treatment is ended. The only treatment that actually works in the long run is changing your diet to avoid (100 %) the foods that are causing us to react, so that our digestive system can heal. Complete intestinal healing for adults usually takes 3–5 years, depending on age. Kids can heal in less than a year. But most of us heal sufficiently within 3–6 months that the diarrhea stops and we feel much, much better. Some of the symptoms such as fatigue and brain fog often take about 2 years or more to resolve.
If you want to see the reasons why we react to those foods (and certain medications), I can provide a detailed medical explanation (in layman's terms) for you. But suffice to say, we don't just adopt these diet changes blindly — they're proven by published medical research and the epidemiological evidence of thousands of us here who have documented in our posts that it works, when done carefully. Unfortunately, most GI specialists in most countries still don't have the training or knowledge necessary to treat the disease effectively in the long term.
You will find guidelines for gaining control of the disease at the link below. Some of us react to more (or different) foods, so note especially, the guidelines suggested for developing your own eating plan (recovery diet), at the second link.
https://www.perskyfarms.com/phpBB2/viewforum.php?f=79
https://www.perskyfarms.com/phpBB2/view ... hp?t=22328
Please feel free to ask any questions that come to mind so that you don't suffer any unnecessary setbacks during your recovery.
Again, welcome aboard, and best of luck to you in your journey back to health,
Tex
Welcome to the group. Yes, that sounds like most of us, when we first came here. Unfortunately the medical treatment is only temporary. 85 % of MC patients relapse after the treatment is ended. The only treatment that actually works in the long run is changing your diet to avoid (100 %) the foods that are causing us to react, so that our digestive system can heal. Complete intestinal healing for adults usually takes 3–5 years, depending on age. Kids can heal in less than a year. But most of us heal sufficiently within 3–6 months that the diarrhea stops and we feel much, much better. Some of the symptoms such as fatigue and brain fog often take about 2 years or more to resolve.
If you want to see the reasons why we react to those foods (and certain medications), I can provide a detailed medical explanation (in layman's terms) for you. But suffice to say, we don't just adopt these diet changes blindly — they're proven by published medical research and the epidemiological evidence of thousands of us here who have documented in our posts that it works, when done carefully. Unfortunately, most GI specialists in most countries still don't have the training or knowledge necessary to treat the disease effectively in the long term.
You will find guidelines for gaining control of the disease at the link below. Some of us react to more (or different) foods, so note especially, the guidelines suggested for developing your own eating plan (recovery diet), at the second link.
https://www.perskyfarms.com/phpBB2/viewforum.php?f=79
https://www.perskyfarms.com/phpBB2/view ... hp?t=22328
Please feel free to ask any questions that come to mind so that you don't suffer any unnecessary setbacks during your recovery.
Again, welcome aboard, and best of luck to you in your journey back to health,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
https://www.perskyfarms.com/phpBB2/viewforum.php?f=71
Three pages of member success stories. All three pages of links are worth a read. They detail what worked for folks just like you.
Three pages of member success stories. All three pages of links are worth a read. They detail what worked for folks just like you.
Jenny,
One of the primary causes of MC is PPIs. The Pantoprazol will always trigger a relapse, so it will defeat your attempts to control your MC by diet (at least it would for most of us). But PPIs are very addictive, because they cause the very symptoms that they're prescribed to treat. So you will probably have to wean off it slowly, using an H2 antihistamine. There's a download on the MCF website describing the problem and how to wean off it, at the link below.
https://www.microscopiccolitisfoundatio ... 112716.pdf
Tex
One of the primary causes of MC is PPIs. The Pantoprazol will always trigger a relapse, so it will defeat your attempts to control your MC by diet (at least it would for most of us). But PPIs are very addictive, because they cause the very symptoms that they're prescribed to treat. So you will probably have to wean off it slowly, using an H2 antihistamine. There's a download on the MCF website describing the problem and how to wean off it, at the link below.
https://www.microscopiccolitisfoundatio ... 112716.pdf
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi,
Yes, it's available in ebook versions on Smashwords, Barnes & Noble, Apple, etc. It's also available in print and ebook versions from Ingram, which means that you should be able to get it from just about any major book distributor anywhere in the world, even libraries. They may not all stock it, but they should be able to get it for you if you ask. If you can't find it online, search for books by the author's name (Wayne Persky).
I hope this helps.
Tex
Yes, it's available in ebook versions on Smashwords, Barnes & Noble, Apple, etc. It's also available in print and ebook versions from Ingram, which means that you should be able to get it from just about any major book distributor anywhere in the world, even libraries. They may not all stock it, but they should be able to get it for you if you ask. If you can't find it online, search for books by the author's name (Wayne Persky).
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.