Hi everyone,
First of all thank you so much for this site it is the first time I feel like I am not alone in this! I was diagnosed with MC 2 days before my birthday this year. It felt like the best birthday present I could ever get knowing there is a name to what I have and i might start feeling some relief. Then the reality set in as I started learning more about it. I have been on entocort for a little over 2 weeks and still am feeling the ill effects of MC. I would appreciate any info on the med. I have been so lost with the diet and hope I am able to find some helpful hints here.
New Kid on the block
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jamiemarie,
Welcome to our online family. I'm sorry you had a reason to seek us out, but I'm glad you found us, and we certainly understand how you feel. This disease can make us feel very isolated, and I can remember feeling all alone in the world, with a disease that no one seemed to understand, before I found the wonderful people of this board.
We have found Entocort to be the most effective, "safe" medication to use for this disease. Not everyone is able to use it, because a few of us have adverse reactions to it, but it seems to be effective for about 60 to 65% of the people who try it. Some of us find that we also have to restrict our diet, if Entocort does not bring relief of the symptoms after a couple of months of use. When the gene that causes MC is triggered, another gene that causes us to be sensitive to gluten, (the main protein in wheat), is almost always triggered, also. The main proteins in barley and rye are very similar to wheat, so we are also intolerant of them. Additionally, most of us suddenly find ourselves intolerant to casein, the main protein in milk, and all dairy products. About half of us are sensitive to the protein in soy, and a few of us are sensitive to various other foods, such as eggs, yeast, and corn. Until the inflammation is controlled, and the gut has sufficient time to heal, we find that fiber makes our condition worse, so we have to avoid most fruits and vegetables, (especially raw ones), until our GI tract returns to a more normal state.
This all sounds overwhelming at first, but we learn to take life one day at a time, and fine-tune our treatment, as necessary, until we find a treatment combination that works for us, and allows us to get our life back. Hopefully, the Entocort will soon control your symptoms. If not, you may be able to help it along, by modifying your diet, if necessary. Some of us control our symptoms by Entocort, or other meds, some of us do it by diet alone, and some of us use a combination of meds and diet. Everyone finds what works best for them, and fine-tunes their treatment program, to fit their own situation, because we all seem to be different in the ways that we respond to meds, and/or diet. There is a huge amount of information here, about all of these issues, and since we have all experienced what you are going through, please feel free to ask anything, and we will do our best to answer. MC can be a very debilitating and humbling disease, and many of us have found that our GI docs are not very well informed about it, nor are they very supportive about the lifestyle changes that are sometimes required, in order to cope with the disease. This is a very understanding, supportive, and knowledgeable group, and we try to cover the vital details that most of our GI docs seem to leave out.
Again, welcome aboard, and I hope you can find the answers here, that you are seeking.
Tex (Wayne)
Welcome to our online family. I'm sorry you had a reason to seek us out, but I'm glad you found us, and we certainly understand how you feel. This disease can make us feel very isolated, and I can remember feeling all alone in the world, with a disease that no one seemed to understand, before I found the wonderful people of this board.
We have found Entocort to be the most effective, "safe" medication to use for this disease. Not everyone is able to use it, because a few of us have adverse reactions to it, but it seems to be effective for about 60 to 65% of the people who try it. Some of us find that we also have to restrict our diet, if Entocort does not bring relief of the symptoms after a couple of months of use. When the gene that causes MC is triggered, another gene that causes us to be sensitive to gluten, (the main protein in wheat), is almost always triggered, also. The main proteins in barley and rye are very similar to wheat, so we are also intolerant of them. Additionally, most of us suddenly find ourselves intolerant to casein, the main protein in milk, and all dairy products. About half of us are sensitive to the protein in soy, and a few of us are sensitive to various other foods, such as eggs, yeast, and corn. Until the inflammation is controlled, and the gut has sufficient time to heal, we find that fiber makes our condition worse, so we have to avoid most fruits and vegetables, (especially raw ones), until our GI tract returns to a more normal state.
This all sounds overwhelming at first, but we learn to take life one day at a time, and fine-tune our treatment, as necessary, until we find a treatment combination that works for us, and allows us to get our life back. Hopefully, the Entocort will soon control your symptoms. If not, you may be able to help it along, by modifying your diet, if necessary. Some of us control our symptoms by Entocort, or other meds, some of us do it by diet alone, and some of us use a combination of meds and diet. Everyone finds what works best for them, and fine-tunes their treatment program, to fit their own situation, because we all seem to be different in the ways that we respond to meds, and/or diet. There is a huge amount of information here, about all of these issues, and since we have all experienced what you are going through, please feel free to ask anything, and we will do our best to answer. MC can be a very debilitating and humbling disease, and many of us have found that our GI docs are not very well informed about it, nor are they very supportive about the lifestyle changes that are sometimes required, in order to cope with the disease. This is a very understanding, supportive, and knowledgeable group, and we try to cover the vital details that most of our GI docs seem to leave out.
Again, welcome aboard, and I hope you can find the answers here, that you are seeking.
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.
Hi Jamiemarie and 
I remember being greatly relieved when the told me I had LC. They had been looking for much nastier things so this was trivial by comparison. It seems odd to be happy at having something like this, but it beats lots of other options.
You will find the group here is very helpful and supportive and the collective knowledge is huge. Sorry I can't actually help on the Entocort side - I have so far managed with just diet. Changing what you eat is quite a challenge. I really haven't quite got used to planning GF lunches, but avoiding dairy is just second nature - I rarely miss it now.
Pleased to have you on board.
Lyn
I remember being greatly relieved when the told me I had LC. They had been looking for much nastier things so this was trivial by comparison. It seems odd to be happy at having something like this, but it beats lots of other options.
You will find the group here is very helpful and supportive and the collective knowledge is huge. Sorry I can't actually help on the Entocort side - I have so far managed with just diet. Changing what you eat is quite a challenge. I really haven't quite got used to planning GF lunches, but avoiding dairy is just second nature - I rarely miss it now.
Pleased to have you on board.
Lyn
Hi Jamiemarie,
Really glad you are getting treatment and the more you know about MC the better. There are a LOT of articles, research sites and just posts about other's experiences on this site. Just try to cover it all and see what sounds like it might appeal to you as a treatment. I hope the Entocort works well for you (and soon).
Don't be afraid to ask all kinds of questions. We all did (and do). Nothing is too gross to discuss here either.
Welcome to the site, Shirley
Really glad you are getting treatment and the more you know about MC the better. There are a LOT of articles, research sites and just posts about other's experiences on this site. Just try to cover it all and see what sounds like it might appeal to you as a treatment. I hope the Entocort works well for you (and soon).
Don't be afraid to ask all kinds of questions. We all did (and do). Nothing is too gross to discuss here either.
Welcome to the site, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Jamimarie 
I recently stopped taking Entocort and am managing by diet alone. It took about 4 weeks of being on Entocort before I saw any change in the D. Once it began to work, it was like a miracle medication for me and I got my life back. I haven't had any side effects from using it, though others here have reported some. I think if you're going to have side effects, you will get them right away. If you haven't noticed any in two weeks, chances are you'll be OK.
Your doctor will probably want you to taper off the Entocort in a few months, but our experience here is that it takes much longer, usually 6 months or more.
I'm sure you are reading a lot of the posts on this board; I know that I did when I found it. If you have any questions, please don't hesitate to ask. We are all here to support each other.
Gloria
I recently stopped taking Entocort and am managing by diet alone. It took about 4 weeks of being on Entocort before I saw any change in the D. Once it began to work, it was like a miracle medication for me and I got my life back. I haven't had any side effects from using it, though others here have reported some. I think if you're going to have side effects, you will get them right away. If you haven't noticed any in two weeks, chances are you'll be OK.
Your doctor will probably want you to taper off the Entocort in a few months, but our experience here is that it takes much longer, usually 6 months or more.
I'm sure you are reading a lot of the posts on this board; I know that I did when I found it. If you have any questions, please don't hesitate to ask. We are all here to support each other.
Gloria
You never know what you can do until you have to do it.
Hi Jamiemarie,
I found this board last Dec. They have been my salvation! I'm currently on entocort. I started last Feb. It took almost 2 months before I saw results that I would call "normal". Diet is just as important for me. Even on the entocort, if I eat anything that I'm sensitive to, I soon know it. I'm planning on staying on the full enotcort dose through July, and then I'll start tapering. Good luck to you, JoAnn
I found this board last Dec. They have been my salvation! I'm currently on entocort. I started last Feb. It took almost 2 months before I saw results that I would call "normal". Diet is just as important for me. Even on the entocort, if I eat anything that I'm sensitive to, I soon know it. I'm planning on staying on the full enotcort dose through July, and then I'll start tapering. Good luck to you, JoAnn
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Jamiemarie,
You have definitely landed on a site that can only be considered the best on the web for our disease. There is so much information here and everyone is like family and will be able to answer your questions and help you if you have down days and laugh with you on the fun ones.
Maggie
You have definitely landed on a site that can only be considered the best on the web for our disease. There is so much information here and everyone is like family and will be able to answer your questions and help you if you have down days and laugh with you on the fun ones.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!