Visit the Microscopic Colitis Foundation Website
Hello - I just found your site today and it is a true blessing. I was diagnosed with collagenous colitus 12/15/09 after a colonscopy and multiple biopsies. Before that I had been suffering for about 4 months from what I called explosive D. I am 58 and had never had any problems before. I travel a lot with my job and it was getting to be extremely hard to continue the travel, meet with customers, etc. When I went to my GI Doc about the symptoms he immediately scheduled the colonscopy and I had the diagonisis within a few days. He put me on Entocort EC 3 mg pills, 3 pills a day. The D went away in about weeks. It seemed like a miracle. He took me off of it 2 weeks ago (after taking for 3 months) and so far I am okay but am starting to notice some rumbling in by stomach/intestines coming back. I don't really want to start the Entocort again unless I have to (man is it expensive). As I have seen from others, the Doc said there is no relationship to diet. This forum certainly seens to indicate otherwise so I would certainly like to try this angle. Any suggestions on the best way to start? Write now I eat and drink just about anything - gluten, lactose, caffiene, alchohol.
Thanks for your support.
New to Forum
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Robert,
Welcome to our internet family. It's good to hear that your GI doc was able to get you to remission so quickly. Unfortunately, most GI docs still have a long way to go, to learn how to properly treat this disease, in the long run.
Most of us aren't satisfied with just a few weeks of remission - we would like to have our life back on a more permanent basis. 
Basically, at this point, you have two options, a maintenance dose of Entocort, or some other inflammation or immune-suppressing medication, for the rest of your life, or permanent diet changes. Many GI docs aren't even up to speed with the use of Entocort, for long-term treatment, and they mistakenly believe that it has the same long-term health risks as the other corticosteroids. It does not. Only 10 to 15% of the active ingredient in Entocort EC, (budesonide), is absorbed into the bloodstream, in a typical patient, so the systemic side effects caused by the other cortocosteroids, are rarely a problem, with Entocort, especially when long-term use is desirable.
After achieving remission, many members here maintain their remission by taking only one 3 mg pill per day, or even every other day, and in a few cases, one every third day. At those low doses, most people can take Entocort EC indefinitely, without a significant risk of developing adverse side effects. Since your intestines are already showing the signs of a flare, however, (the unique rumbling noise that is characteristic of celiac disease and the IBDs), you may have to increase your dose to 6 mg per day, (or even 9 mg per day), until you are once again in remission, and after being in remission for a while, then you can begin to slowly taper your dose down to whatever minimum level you find to be effective, in your case, (we are all different in our response to many medications). For most of us, it is necessary to continue that maintenance dose for the rest of our lives, if we want to avoid a relapse.
The other choice is modifying your diet, (which is the safest, of course, since it requires no drugs). If you wish to consider doing that, there is a lot of information on how to go about it, in this formation:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
And Dee, (a professional chef, with MC), has perfected hundreds of gourmet quality recipes, that are gluten-free, casein-free, and soy free, and she is kind enough to share them with us:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Most of all, though, anytime any questions come to mind, never hesitate to ask - there are no "dumb" questions with this disease, because even most GI specialists don't know how to properly treat it. Again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. It's good to hear that your GI doc was able to get you to remission so quickly. Unfortunately, most GI docs still have a long way to go, to learn how to properly treat this disease, in the long run.
Most of us aren't satisfied with just a few weeks of remission - we would like to have our life back on a more permanent basis. Basically, at this point, you have two options, a maintenance dose of Entocort, or some other inflammation or immune-suppressing medication, for the rest of your life, or permanent diet changes. Many GI docs aren't even up to speed with the use of Entocort, for long-term treatment, and they mistakenly believe that it has the same long-term health risks as the other corticosteroids. It does not. Only 10 to 15% of the active ingredient in Entocort EC, (budesonide), is absorbed into the bloodstream, in a typical patient, so the systemic side effects caused by the other cortocosteroids, are rarely a problem, with Entocort, especially when long-term use is desirable.
After achieving remission, many members here maintain their remission by taking only one 3 mg pill per day, or even every other day, and in a few cases, one every third day. At those low doses, most people can take Entocort EC indefinitely, without a significant risk of developing adverse side effects. Since your intestines are already showing the signs of a flare, however, (the unique rumbling noise that is characteristic of celiac disease and the IBDs), you may have to increase your dose to 6 mg per day, (or even 9 mg per day), until you are once again in remission, and after being in remission for a while, then you can begin to slowly taper your dose down to whatever minimum level you find to be effective, in your case, (we are all different in our response to many medications). For most of us, it is necessary to continue that maintenance dose for the rest of our lives, if we want to avoid a relapse.
The other choice is modifying your diet, (which is the safest, of course, since it requires no drugs). If you wish to consider doing that, there is a lot of information on how to go about it, in this formation:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
And Dee, (a professional chef, with MC), has perfected hundreds of gourmet quality recipes, that are gluten-free, casein-free, and soy free, and she is kind enough to share them with us:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Most of all, though, anytime any questions come to mind, never hesitate to ask - there are no "dumb" questions with this disease, because even most GI specialists don't know how to properly treat it. Again, welcome aboard.
Tex (Wayne)
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.
Robert, I'm glad you found us. I raise the PP 
to your doctor. Diet has EVERYTHING to do with it for almost all of us. Read and read here and www.enterolab.comDISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Robert,
welcome to the site, and greetings from Australia.
I was diagnosed in late Dec '09. i found this site within 2 days of diagnosis (thanks goodness). I am attempting to use diet as the main management tool and try not to take any meds for the MC. if there is an important meeting for work and the digestion is a bit dodgy then i will take loperamide, i find it takes 3 days to recover from this so i only do this if i really really have to.
I also use acupuncture and herbs and minerals to treat the inflammation etc
feel free to ask anything this is the one place you can ask questions about gas, poo etc! sure enough there will be at least one other person who has experienced similar. There are some amazing wonderful knowledgeable people in this group.
no matter what treatment regime you use (meds / meds+diet / diet only etc) adjustment and transition to living with MC is hard work, and what i have found is there is no easy way or short cuts.... it is living in the now, deal with what is happening today, try not to stress
in the words of john denver.....some days are diamonds some days are stone.
(for me, today is a diamond day!
)
take care
welcome to the site, and greetings from Australia.
I was diagnosed in late Dec '09. i found this site within 2 days of diagnosis (thanks goodness). I am attempting to use diet as the main management tool and try not to take any meds for the MC. if there is an important meeting for work and the digestion is a bit dodgy then i will take loperamide, i find it takes 3 days to recover from this so i only do this if i really really have to.
I also use acupuncture and herbs and minerals to treat the inflammation etc
feel free to ask anything this is the one place you can ask questions about gas, poo etc! sure enough there will be at least one other person who has experienced similar. There are some amazing wonderful knowledgeable people in this group.
no matter what treatment regime you use (meds / meds+diet / diet only etc) adjustment and transition to living with MC is hard work, and what i have found is there is no easy way or short cuts.... it is living in the now, deal with what is happening today, try not to stress
in the words of john denver.....some days are diamonds some days are stone.
(for me, today is a diamond day!
)take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks all for your quick and useful information. After I posted my note earlier today the rumbling turned into D. I will be calling the Doc tomorrow but also reading all the useful sites you have provided. It is great to know there are others out there with so much knowledge.
One other question. I have been taking vitamins for years - a mutiple, C, Niacin, and I also take lipitor. Ever hear of any connection with these?
Thanks again for your help.
Robert
One other question. I have been taking vitamins for years - a mutiple, C, Niacin, and I also take lipitor. Ever hear of any connection with these?
Thanks again for your help.
Robert
-
Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
Welcom
Welcome Robert! I'm Olivia an was diagnosed with LC last week. i am an active duty Marine who travels a lot too. I'd recomend trying the diet. i'd start by taking lactose out of your diet for a week or two see if u have any changes in your D. Then you can try Gluten. I'm currently trying a gluten free diet. As far as vitamins they have helped me. i lost weight really fast when i was in and out of the hospital for dehyration. My body wouldn't hold on to anything. My doc told me to take vitamins. I have seen an improvement and held on to my weight more. especially when i have explosive D. I take a multivitamin, a vita pack, fish oil, vitamin c, vitamin d, and iron. I am a very active person so i need to try to hold on to as much nutriets as i can. Welcome to our family. Always ask questions. You'll see people like Tex know a lot. But keep inmind alot of us are very different you just have to do trial and error to see what works for you.
Your story (history) is NORMAL for a lot of MC/CC’rs even thought right now your are feeling very much other than normal. 
One of the first things I noticed on this forum were the number of people who had taken Entocort successfully and then discontinued the drug, only to have symptoms begin to reappear roughly 5 weeks later. These are all of course, anecdotal reports. Then, lo and behold, a formal study was done not long after, finding that the average relapse time after D/C of Entocort was something like 37 – 38 days. There you go … 5 +/- weeks. You are a little ahead of schedule, that’s all. That’s part of what makes for the average.
8 weeks of 9 mg./day initially is kind of SOP with a lot of Docs. They believe that this may be all some folks need, so they try to terminate the drug at that point. If the problem resumes they may have to be on it a longer (???) period of time.
Although it is not necessary to "wean" off of Entocort - as it is with other steroids - many Doc’s will want you to “taper” after an initial period to 6mg/day for a few weeks. Then 3mg/day for a period of time, and then 3mg/day every other day. Duration ???? Nothing is really known about long term Entocort Therapy, but the comfort time is extending as they are gaining more experience with it.
I have had personal experience with 2 ASA’s but I can’t tolerate them. Doc say’s if I have to be on “long term Entocort, -- that wouldn’t be the worst thing in the world”. So we’ll just see. Extra Calcium and Vit D is strongly recommended.
Expensive – you bet. But if you can get tapered down to a very minimal dose, that helps a bunch, and there are other avenues to pursue if this does become your treatment of choice. Since you travel for your job, control is extremely important to you. You could resume the Entocort and then taper while trying to figure out if/what food ingredients might be contributing to your problem here.
Regarding this statement ....
Best we begin to learn to think in other terms. That may have been how it WAS. But this is how it IS now. Things change. You may have to learn to change a few things. Avoid all NSAIDs. Stay patient. This condition can be managed. The trick is to find your where your niche is.
,
Gayle
One of the first things I noticed on this forum were the number of people who had taken Entocort successfully and then discontinued the drug, only to have symptoms begin to reappear roughly 5 weeks later. These are all of course, anecdotal reports. Then, lo and behold, a formal study was done not long after, finding that the average relapse time after D/C of Entocort was something like 37 – 38 days. There you go … 5 +/- weeks. You are a little ahead of schedule, that’s all. That’s part of what makes for the average.
8 weeks of 9 mg./day initially is kind of SOP with a lot of Docs. They believe that this may be all some folks need, so they try to terminate the drug at that point. If the problem resumes they may have to be on it a longer (???) period of time.
Although it is not necessary to "wean" off of Entocort - as it is with other steroids - many Doc’s will want you to “taper” after an initial period to 6mg/day for a few weeks. Then 3mg/day for a period of time, and then 3mg/day every other day. Duration ???? Nothing is really known about long term Entocort Therapy, but the comfort time is extending as they are gaining more experience with it.
I have had personal experience with 2 ASA’s but I can’t tolerate them. Doc say’s if I have to be on “long term Entocort, -- that wouldn’t be the worst thing in the world”. So we’ll just see. Extra Calcium and Vit D is strongly recommended.
Expensive – you bet. But if you can get tapered down to a very minimal dose, that helps a bunch, and there are other avenues to pursue if this does become your treatment of choice. Since you travel for your job, control is extremely important to you. You could resume the Entocort and then taper while trying to figure out if/what food ingredients might be contributing to your problem here.
Regarding this statement ....
.Write now I eat and drink just about anything - gluten, lactose, caffeine, alchohol
Best we begin to learn to think in other terms.
That may have been how it WAS. But this is how it IS now. Things change. You may have to learn to change a few things. Avoid all NSAIDs. Stay patient. This condition can be managed. The trick is to find your where your niche is. ,Gayle
Robert,
Vitamin supplements are usually helpful, but taking any of the statins, is not without risk. They have been linked with ulcerative colitis:
http://pmj.bmj.com/content/78/919/286.abstract
and microscopic colitis:
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0
Also, while the labeled initial treatment with Entocort EC is 8 weeks, (which is why most docs only prescribe it for 8 weeks), the drug has been used in long-term trials, and Entocort is recommenced for, (and labeled by the manufacturer), for long term use, (at reduced dosage rates), for Crohn's disease, (note that there are no drugs labeled for use to treat MC, so all drug treatments for MC are off label):
http://www.entocortec.com/HCP/Indications_Long.asp
http://www.drugs.com/sfx/entocort-ec-side-effects.html
Tex
Vitamin supplements are usually helpful, but taking any of the statins, is not without risk. They have been linked with ulcerative colitis:
http://pmj.bmj.com/content/78/919/286.abstract
and microscopic colitis:
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0
Also, while the labeled initial treatment with Entocort EC is 8 weeks, (which is why most docs only prescribe it for 8 weeks), the drug has been used in long-term trials, and Entocort is recommenced for, (and labeled by the manufacturer), for long term use, (at reduced dosage rates), for Crohn's disease, (note that there are no drugs labeled for use to treat MC, so all drug treatments for MC are off label):
http://www.entocortec.com/HCP/Indications_Long.asp
http://www.drugs.com/sfx/entocort-ec-side-effects.html
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.
This one?
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0
Here's the same abstract at a different site:
http://cat.inist.fr/?aModele=afficheN&cpsidt=18528881
Here's a PDF of a Powerpoint presentation made last fall, (by Dr. Pardi), that mentions some/most of the known drug connections with microscopic colitis:
http://www.acg.gi.org/acgmeetings/pdfs/ ... PG1008.PDF
Remember? http://www.perskyfarms.com/phpBB2/viewtopic.php?p=70191
Tex
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0
Here's the same abstract at a different site:
http://cat.inist.fr/?aModele=afficheN&cpsidt=18528881
Here's a PDF of a Powerpoint presentation made last fall, (by Dr. Pardi), that mentions some/most of the known drug connections with microscopic colitis:
http://www.acg.gi.org/acgmeetings/pdfs/ ... PG1008.PDF
Remember? http://www.perskyfarms.com/phpBB2/viewtopic.php?p=70191
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.
YIKES, I guess Lipitor and Pravachol took away my memory. Yes, that's the ticket. 
Not this bad, though http://www.spacedoc.net/lipitor_thief_of_memory.html
Not this bad, though http://www.spacedoc.net/lipitor_thief_of_memory.html
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Joan,
Not to worry - I don't even have any excuse for my occasional memory lapses.
That's a scary article that you cited. I didn't have any idea that the side effects could be that bad.
Tex
Not to worry - I don't even have any excuse for my occasional memory lapses.
That's a scary article that you cited. I didn't have any idea that the side effects could be that bad.
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.