I am brand new to Microscopic colitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Well said, Tex, although I have to say that I think you normally give a very good explanation about Entocort to at least most newcomers, if not all..... I haven't really kept a scorecard on you or anyone else for that matter. Also, you (and others) are constantly doing research on the internet and probably other places for information which might help.
This board is a GodSend for a lot of people. Some have achieved remission (with either diet or meds) and gone on with their lives, others have just come and gone, some just stick around because it's nice to communicate with others who have some of the same problems. That's the way life is.
I think it's great when we can hear what works for others even if choose not to follow their path. Sometimes a person can get a bit "agressive" in advising (and I'm not pointing fingers at ANYONE or thinking of any specific occasion)....... however, that doesn't mean the person being advised has to follow that advice. Just sift through the input and see what you want to adopt, try, whatever.
Thanks to all of you.............
Love, Shirley
This board is a GodSend for a lot of people. Some have achieved remission (with either diet or meds) and gone on with their lives, others have just come and gone, some just stick around because it's nice to communicate with others who have some of the same problems. That's the way life is.
I think it's great when we can hear what works for others even if choose not to follow their path. Sometimes a person can get a bit "agressive" in advising (and I'm not pointing fingers at ANYONE or thinking of any specific occasion)....... however, that doesn't mean the person being advised has to follow that advice. Just sift through the input and see what you want to adopt, try, whatever.
Thanks to all of you.............
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Shirley,
I am with you. I think that this board is a Godsend and a life line. I was so at the end of my rope when I found this family (and believe me this is a very loving family). I love reading everyone's information and am trying to absorb it all. I have learned so so much from Tex and the PP and am so very grateful that you all have come in to my life. It is just so nice to know that I am not alone in my daily struggles with cc. And though I don't wish this upon anyone, it is just comforting to know that I can come hear and seek advice or vent if I need to.
Love,
Rose
I am with you. I think that this board is a Godsend and a life line. I was so at the end of my rope when I found this family (and believe me this is a very loving family). I love reading everyone's information and am trying to absorb it all. I have learned so so much from Tex and the PP and am so very grateful that you all have come in to my life. It is just so nice to know that I am not alone in my daily struggles with cc. And though I don't wish this upon anyone, it is just comforting to know that I can come hear and seek advice or vent if I need to.
Love,
Rose
I think that we members who have been here for a few years can relate to any of the new members who are searching and trying to figure out, how to get it all to, just stop and go away.
Let's face it, I think we all were just so full of overwhelmness and trying to take in as much as we could when we were diagnosed.
We need to let new members know to slow down, take a deep breath, and we are here to express different options that have worked for some and that we will try to answer any question that they have.
They need to know that there are choices for "them to decide" whether they are interested in trying or not.
I surely remember how I was when my GI told me that I had collagenous colitis and I was a mess.
I remember being a prisoner in my own home for at least 6 months because I was in no way going to have an accident in public.... My husband has been a Godsend, supporting me thru the last 6 years.
Now family!!! fst! fst!!! Denise just has a case of diarrhea!!!!! I'm so beyond trying to get them to understand.
We all can agree that there is a wealth of information on this board and the key player is Wayne (Tex). I've been here 4 years and because of others I'm still learning new things that come along.
My interpretation of aggressiveness on the board is actually the "zest" that some have to give as much information and options out there to a new member, as quickly as they can, to hopefully help them start on their journey to remission..
Just my 2 cents worth, and I think we all need:
Love
Dee~~~~
Let's face it, I think we all were just so full of overwhelmness and trying to take in as much as we could when we were diagnosed.
We need to let new members know to slow down, take a deep breath, and we are here to express different options that have worked for some and that we will try to answer any question that they have.
They need to know that there are choices for "them to decide" whether they are interested in trying or not.
I surely remember how I was when my GI told me that I had collagenous colitis and I was a mess.
I remember being a prisoner in my own home for at least 6 months because I was in no way going to have an accident in public.... My husband has been a Godsend, supporting me thru the last 6 years.
Now family!!! fst! fst!!! Denise just has a case of diarrhea!!!!! I'm so beyond trying to get them to understand.
We all can agree that there is a wealth of information on this board and the key player is Wayne (Tex). I've been here 4 years and because of others I'm still learning new things that come along.
My interpretation of aggressiveness on the board is actually the "zest" that some have to give as much information and options out there to a new member, as quickly as they can, to hopefully help them start on their journey to remission..
Just my 2 cents worth, and I think we all need:
Love
Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Dee said: "My interpretation of aggressiveness on the board is actually the "zest" that some have to give as much information and options out there to a new member, as quickly as they can, to hopefully help them start on their journey to remission.. "
Much better description.
Love, Shirley
Much better description.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Tex,
It seems I really upset the apple cart with my comments. It truly was not my intention. I came to the forum to try to help me understand this disease process since there is so little information available. I have access to Medscape (because my husband is a Chiro) which is the MD's version of web md and I read as much info as I could find. Not much out there!!! Then I searched the web read Dr. Fine's info and everything else I could read. After my first day here and reading the responses I was completely over whelmed, and yes you are correct that I was experiencing the normal grieving process. I guess I was surprised that you have all found this to be a life long condition, when that was not the message anywhere I read in literature, and it was not my experience with my mother. That was a shock to me and kept me in tears for so long.
I live an extremely active life style with a large family and many friends, I bike, ski, run, fish, hike, garden along with being a watercolor artist. All I could think about was how this was going to put a huge burden upon me trying to make appropriate dietary adjustments and would I have to stop doing some of the things that are so important to me. For instance when I go on these long group bike rides 70-100 miles with 2000-3000 riders, there are stops for food, and none of the food available that provides enough nutrition to sustain you, is gluten or lactose free. When you ride there is no way to carry your own food as you do everything you can to lighten your load. All I could think about was how will I make that work. And on top of that what if I have D on the ride and there is nowhere to go. That is why I cried for so long. I was truly grieving a loss.
Now that I have come to terms with some of this, the burden feels somewhat lighter. I think the trouble I had with the comments I got on this forum at first, was it seemed you all thought your way was the only way. I think it is important to let newcomers know there are many ways to skin a cat. I continue to have another day without D and progress on the Guts and Glory diet. A large part of this diet is reducing inflammation with the diet and supplements they recomend. I work with many nutritional supplements in our Chiropractic office and coincedently today one of my reps came in and gave me info about similar supplements(to the ones I am taking) that have been studied to reduce the symptoms of Ulcerative Colitis and she even provided case studies and results. I don't know how many of you take natural antiiflamatory supplements and Fish Oil, but they can work very hard to decrease inflammation all over the body, especially fish oil. That is also the purpose of Asacol and Endocort. I always like to try natural before drugs. If you use fish oil it is important to find a product from wild fish and a cold water source, they are more concentrated and provide a greater DHA and EPA concentrations, with less contamination.
As a person with the disease and an RN with an alternative background, I am excited to be part of this forum, to learn from you and hopefully to impart my knowledge base to anyone who may benefit. I surely did not expect to shake things up and bring up negative feelings. I aologize if I did.
Keep all the good info flowing
KD
It seems I really upset the apple cart with my comments. It truly was not my intention. I came to the forum to try to help me understand this disease process since there is so little information available. I have access to Medscape (because my husband is a Chiro) which is the MD's version of web md and I read as much info as I could find. Not much out there!!! Then I searched the web read Dr. Fine's info and everything else I could read. After my first day here and reading the responses I was completely over whelmed, and yes you are correct that I was experiencing the normal grieving process. I guess I was surprised that you have all found this to be a life long condition, when that was not the message anywhere I read in literature, and it was not my experience with my mother. That was a shock to me and kept me in tears for so long.
I live an extremely active life style with a large family and many friends, I bike, ski, run, fish, hike, garden along with being a watercolor artist. All I could think about was how this was going to put a huge burden upon me trying to make appropriate dietary adjustments and would I have to stop doing some of the things that are so important to me. For instance when I go on these long group bike rides 70-100 miles with 2000-3000 riders, there are stops for food, and none of the food available that provides enough nutrition to sustain you, is gluten or lactose free. When you ride there is no way to carry your own food as you do everything you can to lighten your load. All I could think about was how will I make that work. And on top of that what if I have D on the ride and there is nowhere to go. That is why I cried for so long. I was truly grieving a loss.
Now that I have come to terms with some of this, the burden feels somewhat lighter. I think the trouble I had with the comments I got on this forum at first, was it seemed you all thought your way was the only way. I think it is important to let newcomers know there are many ways to skin a cat. I continue to have another day without D and progress on the Guts and Glory diet. A large part of this diet is reducing inflammation with the diet and supplements they recomend. I work with many nutritional supplements in our Chiropractic office and coincedently today one of my reps came in and gave me info about similar supplements(to the ones I am taking) that have been studied to reduce the symptoms of Ulcerative Colitis and she even provided case studies and results. I don't know how many of you take natural antiiflamatory supplements and Fish Oil, but they can work very hard to decrease inflammation all over the body, especially fish oil. That is also the purpose of Asacol and Endocort. I always like to try natural before drugs. If you use fish oil it is important to find a product from wild fish and a cold water source, they are more concentrated and provide a greater DHA and EPA concentrations, with less contamination.
As a person with the disease and an RN with an alternative background, I am excited to be part of this forum, to learn from you and hopefully to impart my knowledge base to anyone who may benefit. I surely did not expect to shake things up and bring up negative feelings. I aologize if I did.
Keep all the good info flowing
KD
Yep!!!
We are all different and what works for one does not work for all.
Gee! How boring this board would be if we all had the cure all!!!!
We'd never be where we are now!!!
Unless an alternative is FDA approved I won't go near it!! Especially being on heart meds.
Fish oil is out since I'm allergic to fish..
SIGH!!!!!
Love
Dee~~~~
We are all different and what works for one does not work for all.
Gee! How boring this board would be if we all had the cure all!!!!
We'd never be where we are now!!!
Unless an alternative is FDA approved I won't go near it!! Especially being on heart meds.
Fish oil is out since I'm allergic to fish..
SIGH!!!!!
Love
Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
I wish you could have picked another phrase than skin a cat when my cat is missing and probably gone forever probably thanks to the neighborhood dogs. 
Then may I assume that you won't mind if I post an article about the Blood Type Diet?
Then may I assume that you won't mind if I post an article about the Blood Type Diet?
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Dear KD,
I'm quite sure it was nobody's intention to make you feel bad and you shouldn't. I'm glad you are here and I am looking forward to finding out how you make out with your treatment. I truly hope you are successful.
Do you consider Carlson's Norwegian Cod Liver Oil to be a quality product? It was highly recommended to me a few years ago and I have used it off and on ever since. You seem to be pretty knowledgable about natural supplements so I wondered what you think about that brand.
Love, Shirley
I'm quite sure it was nobody's intention to make you feel bad and you shouldn't. I'm glad you are here and I am looking forward to finding out how you make out with your treatment. I truly hope you are successful.
Do you consider Carlson's Norwegian Cod Liver Oil to be a quality product? It was highly recommended to me a few years ago and I have used it off and on ever since. You seem to be pretty knowledgable about natural supplements so I wondered what you think about that brand.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
When I read your comment KD, I related to your feelings of despair and discouragement. I had the same feelings when I received my Enterolab tests and realized that I would have to dramatically change my diet. This is certainly a life-altering disease and I recently commented that I sometimes feel that the cure is worse than the disease. It's hard to realize that I'll never be able to eat an eclair again. 
I have always felt great support here, and also have felt some gentle nudging about my dietary choices. But I know that members here are only trying to help and have our best interests at heart. We don't feel bothered when a doctor tells us to lose weight, quit smoking or drinking, or whatever because he is trained to treat us (for other diseases, anyway - LOL). That's how I feel about the advice I receive here. Members have been through the trials of this disease and are sharing what they have learned. I hope that they continue to do so and don't refrain from offering suggestions, because that's why people come here.
I am fascinated with your experience with the "Guts and Glory" diet and I sincerely hope you continue to share your progress. We are always excited to hear success stories. I did contemplate following the plan; I believe someone recommended it either here or on the old site. It just didn't appeal to me, just as our dietary suggestions didn't appeal to you. His book also recommends a big change in diet, though if you're eating Paleo, you're very close to it.
I looked at the book today and saw that the author does recommend that you continue to take the clay twice a day as a maintenance dose, even after you are healed. I'm wondering if the clay is similar to Pepto Bismol in that it provides a coating or buffer between the offending foods and the colon. It would be interesting to know if the colon remains healed if you stop taking the clay. Tex might have more insight on this because he is familiar with the properties of bentonite.
Gloria
I have always felt great support here, and also have felt some gentle nudging about my dietary choices. But I know that members here are only trying to help and have our best interests at heart. We don't feel bothered when a doctor tells us to lose weight, quit smoking or drinking, or whatever because he is trained to treat us (for other diseases, anyway - LOL). That's how I feel about the advice I receive here. Members have been through the trials of this disease and are sharing what they have learned. I hope that they continue to do so and don't refrain from offering suggestions, because that's why people come here.
I am fascinated with your experience with the "Guts and Glory" diet and I sincerely hope you continue to share your progress. We are always excited to hear success stories. I did contemplate following the plan; I believe someone recommended it either here or on the old site. It just didn't appeal to me, just as our dietary suggestions didn't appeal to you. His book also recommends a big change in diet, though if you're eating Paleo, you're very close to it.
I looked at the book today and saw that the author does recommend that you continue to take the clay twice a day as a maintenance dose, even after you are healed. I'm wondering if the clay is similar to Pepto Bismol in that it provides a coating or buffer between the offending foods and the colon. It would be interesting to know if the colon remains healed if you stop taking the clay. Tex might have more insight on this because he is familiar with the properties of bentonite.
Gloria
You never know what you can do until you have to do it.
KD,
There's no need for you to apologize, life is too short to dwell on bygones. With MC, we have learned that sometimes the only way we can cope, is to live one day at a time, until we feel secure enough to plan ahead, as far into the future as we dare.
If we put our heads together, I"m sure we can come up with some good options for keeping you well fueled, and hydrated, during your rides. We have several members who run marathons, and they have been pretty successful at overcoming the obstacles that MC has imposed upon them, even before they achieve remission, in some cases. People who have MC are very special, in many ways, (and I'm not referring to the fact that they have the disease) - they are very special in many other ways.
Many of us use natural remedies and supplements. Most of us have found, though, that they are not enough to control the symptoms by themselves. We benefit the most by taking that fish oil, or whatever, along with the diet, or along with Entocort. With MC, the name of the game is to get the symptoms under control as quickly as possible, and then fine tune the treatment program as needed, or after we're feeling better.
Speaking of information about MC on the internet, based on what I have seen, probably close to 90% of the information posted by the most prestigious medical institutions in the world, is obsolete, and contains so much incorrect information as to be worse than useless, (worse, since so many people read it, believe it, and then go on to repeat it). Most of that info appears to have been posted about 20 or so years ago, (when no one understood MC), and it has never been substantially updated, even though much more current information, (and much more accurate information), is available.
20 some-odd years ago, the attitude of the medical community toward MC was very unrealistic, and it has been very slow to change. That attitude is pretty well summed up by the conclusion stated in this reference from 10 years ago:
Today, to the members of this board, that opinion sounds so out of place as to be absolutely ludicrous. How did they reach that conclusion? Many of us here have had the disease for 10 years or longer. Why do we still fall out of remission if we either slip up on our diet, or stop taking a maintenance med? I doubt that the disease has changed that much in 10 years. Obviously, someone was either incompetent, or dishonest, when that article was researched and written.
Also, many medical authorities still consider MC to be a disease of "older" people, and yet we have several very, very young members on this board, (or rather their mothers have joined, on their behalf). This thread is worthwhile reading:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8503
Over the years, many doctors and nurses have joined this board, but so far, only one has stuck around very long, (a doctor), and she has been here since day one. Obviously, her generous sharing of her experiences, her insight, and her opinions, has been extremely beneficial, since she is always open-minded, and willing to think out of the box. I've often wondered if the others are still struggling with the disease, or if they just collected the information that they needed, benefited from it, and then moved on. I sincerely hope that you will stick around, and share information, and get your life back, by using whatever treatment plan you decide is best for you. There definitely is life after a diagnosis of MC, and once you achieve remission, you will be surprised at just how satisfying and enjoyable it can be.
Tex
There's no need for you to apologize, life is too short to dwell on bygones. With MC, we have learned that sometimes the only way we can cope, is to live one day at a time, until we feel secure enough to plan ahead, as far into the future as we dare.
If we put our heads together, I"m sure we can come up with some good options for keeping you well fueled, and hydrated, during your rides. We have several members who run marathons, and they have been pretty successful at overcoming the obstacles that MC has imposed upon them, even before they achieve remission, in some cases. People who have MC are very special, in many ways, (and I'm not referring to the fact that they have the disease) - they are very special in many other ways.
Many of us use natural remedies and supplements. Most of us have found, though, that they are not enough to control the symptoms by themselves. We benefit the most by taking that fish oil, or whatever, along with the diet, or along with Entocort. With MC, the name of the game is to get the symptoms under control as quickly as possible, and then fine tune the treatment program as needed, or after we're feeling better.
Speaking of information about MC on the internet, based on what I have seen, probably close to 90% of the information posted by the most prestigious medical institutions in the world, is obsolete, and contains so much incorrect information as to be worse than useless, (worse, since so many people read it, believe it, and then go on to repeat it). Most of that info appears to have been posted about 20 or so years ago, (when no one understood MC), and it has never been substantially updated, even though much more current information, (and much more accurate information), is available.
20 some-odd years ago, the attitude of the medical community toward MC was very unrealistic, and it has been very slow to change. That attitude is pretty well summed up by the conclusion stated in this reference from 10 years ago:
http://www.ncbi.nlm.nih.gov/pubmed/9824342CONCLUSIONS: Lymphocytic colitis is characterised by a benign course with resolution of diarrhoea and normalisation of histology in over 80% of patients within 38 months. Considering the benign course of the disease, the potential benefit of any drug treatment should be carefully weighed against its potential side effects.
Today, to the members of this board, that opinion sounds so out of place as to be absolutely ludicrous. How did they reach that conclusion? Many of us here have had the disease for 10 years or longer. Why do we still fall out of remission if we either slip up on our diet, or stop taking a maintenance med? I doubt that the disease has changed that much in 10 years. Obviously, someone was either incompetent, or dishonest, when that article was researched and written.
Also, many medical authorities still consider MC to be a disease of "older" people, and yet we have several very, very young members on this board, (or rather their mothers have joined, on their behalf). This thread is worthwhile reading:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8503
Over the years, many doctors and nurses have joined this board, but so far, only one has stuck around very long, (a doctor), and she has been here since day one. Obviously, her generous sharing of her experiences, her insight, and her opinions, has been extremely beneficial, since she is always open-minded, and willing to think out of the box. I've often wondered if the others are still struggling with the disease, or if they just collected the information that they needed, benefited from it, and then moved on. I sincerely hope that you will stick around, and share information, and get your life back, by using whatever treatment plan you decide is best for you. There definitely is life after a diagnosis of MC, and once you achieve remission, you will be surprised at just how satisfying and enjoyable it can be.
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.
Gloria,
Bentonite is very effective in tying up aflatoxin, so it's certainly possible that it could be equally effective at deactivating the gliadins in gluten that we react to. Here are a couple of research reports done on very young chicks, and piglets, (both of which are very vulnerable to aflatoxicosis):
http://cat.inist.fr/?aModele=afficheN&cpsidt=18324657
http://www.ncbi.nlm.nih.gov/pubmed/18975130
One of the big risks involved with aflatoxin is the fact that cows pass aflatoxin straight through to their milk, and for this reason, any corn fed to dairy cattle has to be very carefully monitored for possible aflatoxin contamination. Look at how effective bentonite was in absorbing the aflatoxin in milk, in this research report:
http://www.springerlink.com/content/l5v64v000g71007r/
Tex
Bentonite is very effective in tying up aflatoxin, so it's certainly possible that it could be equally effective at deactivating the gliadins in gluten that we react to. Here are a couple of research reports done on very young chicks, and piglets, (both of which are very vulnerable to aflatoxicosis):
http://cat.inist.fr/?aModele=afficheN&cpsidt=18324657
http://www.ncbi.nlm.nih.gov/pubmed/18975130
One of the big risks involved with aflatoxin is the fact that cows pass aflatoxin straight through to their milk, and for this reason, any corn fed to dairy cattle has to be very carefully monitored for possible aflatoxin contamination. Look at how effective bentonite was in absorbing the aflatoxin in milk, in this research report:
http://www.springerlink.com/content/l5v64v000g71007r/
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 KD,
Apologies for any sadness caused by my early response. Sometimes things don't come out the way we intend. We learn from that. Maybe I should stick to the cheery welcome. 'Cept I don't think it's fair to leave everything to Tex. So a big SORRY.
This grieving process bit is a doozy isn't it? Some days it is worse than others. In the past nearly 2 years, I have had a number of shock findings, with the LC being first. Despite being a basically optimistic person, on bad days I just want to curl up and die. Spending a day crying sounds downright healthy and reasonable to me. The LC doesn't quote mortality rates, so I guess from that perspective it beats some other conditions. But having to permanently restrict diet has a more intense impact. It's totally different to going on a weight loss diet, where you can always change your mind. It's the finality and the inability to have 'a day off'. The impact on lifestyle. The lack of control. It sucks.
Going to gym now - take out the anger on an inanimate object.
Best wishes.
Lyn
Apologies for any sadness caused by my early response. Sometimes things don't come out the way we intend. We learn from that. Maybe I should stick to the cheery welcome. 'Cept I don't think it's fair to leave everything to Tex. So a big SORRY.
This grieving process bit is a doozy isn't it? Some days it is worse than others. In the past nearly 2 years, I have had a number of shock findings, with the LC being first. Despite being a basically optimistic person, on bad days I just want to curl up and die. Spending a day crying sounds downright healthy and reasonable to me. The LC doesn't quote mortality rates, so I guess from that perspective it beats some other conditions. But having to permanently restrict diet has a more intense impact. It's totally different to going on a weight loss diet, where you can always change your mind. It's the finality and the inability to have 'a day off'. The impact on lifestyle. The lack of control. It sucks.
Going to gym now - take out the anger on an inanimate object.
Best wishes.
Lyn