Hello, all
It's very good to have found this community. You all seem to represent a wealth of wisdom.
I've had MC for about 9 years, with all the symptoms that we know and hate. I have been reluctant to go the drug route, and have tried to use diet and alternative medicine to work with it, with limited success. I retired a bit early to create some space to work on my health--as a lawyer, I have had stressful jobs. I actually lived in a Buddhist monastery in Canada for a bit, and met a naturopath who helped me some with the MC, although it was not helped by the limited and gluten heavy diet there. Back in the states, it has flared up again--though not to the truly awful degree it had toward the end of my work life--and I've decided to try a western medical approach.
I have tried the SCD-gluten free diet for several years, with very little change, so I think it might be time for drugs, much as I don't want to do that. I had another colonoscopy recently which confirms the diagnosis, and I have a young and aware GI doctor. I live in the beautiful mountain desert western U.S., and am active--hiking, cycling, kayaking, etc.--and I do not want to comprise my ability to be active, which has been a concern with drugs, as I have seldom had to take drugs. Reading through the posts here, it seems that Entocort has been very helpful to a number of people, and I want to bring this up with my doctor. It seems that the degree of irritation is so great in my colon that diet/probiotics, etc. just isn't accomplishing anything, so it seems that if I can get a degree of healing that the diet will accomplish much more.
So, I just wanted to introduce myself, and share the healing strategy with such a knowledgeable community!
Hello, new community!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. You've been dealing with this disease for a long time, and I'm sorry to hear that you still have not been able to achieve remission. Hopefully, by reading here, and asking questions, you will be able to find the keys that will allow you to achieve remission.
Yes, Entocort is arguably the optimal choice for controlling MC, if you want to use a med, and many members use it either by itself, or to alleviate their symptoms while they fine tune their diet, and allow their intestines to heal, and then they taper off it, and use diet alone for long term remission.
The reason why the SCD does not work for most people with MC, is because it allows/encourages the use of certain dairy products. In addition to gluten, most of us are intolerant of casein, (the primary protein in milk), and additionally, about half of us are intolerant of soya, (the primary protein in soy beans). It's not the lactose, which is the primary problem for dairy products - it's the casein. All dairy products contain casein. While it's true that most us are indeed lactose intolerant while we are reacting, (any form of enteritis causes a deficiency of lactase enzyme, and thus incompletely digested lactose), this does not result in an autoimmune reaction - it results in the fermentation of the undigested lactose in the colon. Casein, on the other hand, can result in an autoimmune reaction, similar to that of gluten, so it does little good to avoid gluten, if casein is not also eliminated from the diet, since it's presence in the diet will usually sustain the inflammation, (as will soy, or any other foods to which we are intolerant).
We are all different in our food sensitivities, so we have to fine-tune our diets, based on our own individual genetics. We learn by sharing experiences, and by comparing notes, to see what works, and what doesn't work. Everyone develops a treatment plan that suits their lifestyle, and their personal situation.
If you are one who is extremely sensitive to certain foods, (and multiple foods), it might take a combination of Entocort and dieting, to achieve remission. We have a number of members who went that route, while they figured out their food intolerances and fine-tuned their diet. The road to remission is rarely easy, but it is extremely gratifying, once it is found. You definitely can get your life back.
Again, welcome aboard.
Tex
Welcome to our internet family. You've been dealing with this disease for a long time, and I'm sorry to hear that you still have not been able to achieve remission. Hopefully, by reading here, and asking questions, you will be able to find the keys that will allow you to achieve remission.
Yes, Entocort is arguably the optimal choice for controlling MC, if you want to use a med, and many members use it either by itself, or to alleviate their symptoms while they fine tune their diet, and allow their intestines to heal, and then they taper off it, and use diet alone for long term remission.
The reason why the SCD does not work for most people with MC, is because it allows/encourages the use of certain dairy products. In addition to gluten, most of us are intolerant of casein, (the primary protein in milk), and additionally, about half of us are intolerant of soya, (the primary protein in soy beans). It's not the lactose, which is the primary problem for dairy products - it's the casein. All dairy products contain casein. While it's true that most us are indeed lactose intolerant while we are reacting, (any form of enteritis causes a deficiency of lactase enzyme, and thus incompletely digested lactose), this does not result in an autoimmune reaction - it results in the fermentation of the undigested lactose in the colon. Casein, on the other hand, can result in an autoimmune reaction, similar to that of gluten, so it does little good to avoid gluten, if casein is not also eliminated from the diet, since it's presence in the diet will usually sustain the inflammation, (as will soy, or any other foods to which we are intolerant).
We are all different in our food sensitivities, so we have to fine-tune our diets, based on our own individual genetics. We learn by sharing experiences, and by comparing notes, to see what works, and what doesn't work. Everyone develops a treatment plan that suits their lifestyle, and their personal situation.
If you are one who is extremely sensitive to certain foods, (and multiple foods), it might take a combination of Entocort and dieting, to achieve remission. We have a number of members who went that route, while they figured out their food intolerances and fine-tuned their diet. The road to remission is rarely easy, but it is extremely gratifying, once it is found. You definitely can get your life back.
Again, welcome aboard.
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 lotuspetal and 
How wonderful that you lived in a Buddhist monastery for a bit - I'd love to do the same. (I took refuge vows about 1 and 1/2 years ago and just can't seem to get enough of Dharma!). But I can imagine how the diet wreaked havoc with the MC. I believe that one of the things that led to my MC (diagnosed about 10 years ago) was the fact that I had been a vegetarian for 12 years prior and perhaps the huge amounts of grains/soy I ate overloaded my gut. Now I know that I have "hunter-gatherer genes" and have to eat the "paleo diet" to stay healthy. I have been in remission for years now on diet alone, but I would not hesitate to try Entocort to help get back on track if I needed it.
Since you are now exploring Western medicine, you might consider getting some tests with Dr. Fine. Check out www.finerhealth.com in the enterolab section. As you can see from the foods listed under my photo to the left, I have multiple food intolerances. Dr. Fine has tests for most of these offending foods, so you may be interested in ordering them. Also, I had the gene test with Dr. Fine and found out that I have "double DQ1" genes, which predispose to multiple intolerances. In our experience here, those who continue to have symptoms after eliminating gluten almost always have other intolerances that must be eliminated in order to go into remission.
I have no doubt that you will find the right path to health, so hang in there.
I am also active like you. If I don't get to a nearby trail along a stream every day to walk/run, meditate, and enjoy nature, my stress level soars.
Love and namaste,
Polly
P.S. Most who took Entocort and started the diet found that they needed at least 6 mo. (sometimes longer) before they could stop the med and move to diet alone. (Your doc will likely not be aware of this fact).
How wonderful that you lived in a Buddhist monastery for a bit - I'd love to do the same. (I took refuge vows about 1 and 1/2 years ago and just can't seem to get enough of Dharma!). But I can imagine how the diet wreaked havoc with the MC. I believe that one of the things that led to my MC (diagnosed about 10 years ago) was the fact that I had been a vegetarian for 12 years prior and perhaps the huge amounts of grains/soy I ate overloaded my gut. Now I know that I have "hunter-gatherer genes" and have to eat the "paleo diet" to stay healthy. I have been in remission for years now on diet alone, but I would not hesitate to try Entocort to help get back on track if I needed it.
Since you are now exploring Western medicine, you might consider getting some tests with Dr. Fine. Check out www.finerhealth.com in the enterolab section. As you can see from the foods listed under my photo to the left, I have multiple food intolerances. Dr. Fine has tests for most of these offending foods, so you may be interested in ordering them. Also, I had the gene test with Dr. Fine and found out that I have "double DQ1" genes, which predispose to multiple intolerances. In our experience here, those who continue to have symptoms after eliminating gluten almost always have other intolerances that must be eliminated in order to go into remission.
I have no doubt that you will find the right path to health, so hang in there.
I am also active like you. If I don't get to a nearby trail along a stream every day to walk/run, meditate, and enjoy nature, my stress level soars.
Love and namaste,
Polly
P.S. Most who took Entocort and started the diet found that they needed at least 6 mo. (sometimes longer) before they could stop the med and move to diet alone. (Your doc will likely not be aware of this fact).
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Welcome lotuspetal!! 
I don't like to take drugs either, and I didn't initially want to fill my prescription for Entocort. Once I did, however, I became a big fan of it. It gave me my life back and allowed me to pursue the things that I enjoyed. At the same time, it enabled me to determine what was causing the D without being under pressure.
I'm presently off Entocort and am hoping that I can continue to manage this disease by diet alone. I never suffered any side effects while using it, but some here have had to stop taking it. Hopefully you will find that it helps and allows you to resume a normal life.
Please don't hesitate to ask for help. No question is too gross - we've been in your situation and completely understand. Also, be sure to read as much as you can on this site. There's a wealth of information.
Gloria
I don't like to take drugs either, and I didn't initially want to fill my prescription for Entocort. Once I did, however, I became a big fan of it. It gave me my life back and allowed me to pursue the things that I enjoyed. At the same time, it enabled me to determine what was causing the D without being under pressure.
I'm presently off Entocort and am hoping that I can continue to manage this disease by diet alone. I never suffered any side effects while using it, but some here have had to stop taking it. Hopefully you will find that it helps and allows you to resume a normal life.
Please don't hesitate to ask for help. No question is too gross - we've been in your situation and completely understand. Also, be sure to read as much as you can on this site. There's a wealth of information.
Gloria
You never know what you can do until you have to do it.
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lotuspetal
- Posts: 9
- Joined: Thu Apr 23, 2009 8:27 pm
Thank you all for the wonderful responses.
Tex, thanks for the caring that is evident in your posts, your encouragement, and the tip about dairy. I actually eat little dairy, finding that I just don't have much of a taste for it. I got some Parmesan cheese last week, and ended up sprinkling it on top of my pup's food because it wasn't appealing--same with yogurt. I have soy milk, but I think soy causes problems. I belong to a buying club and can get hemp milk in bulk, so I may try that. It's encouraging to know that people have worked with diet and had success.
Polly, I was also a vegetarian for a long time, and have had the same thought as you, that it might have caused some of the sensitivities. My sister and I, who had both been vegetarians, both started feeling a lot better when we added meat to our diets. Like you, if I can be outside a lot, help some in the community, and study/practice Dharma, life seems balanced and good! I hope that the doctor, now that she sees how things are, will be open to my suggestion. I also have a chronic kidney disease, so prolonged dehydration is quite dangerous for me, so doing something is important.
Gloria, I found reading through your account really encouraging and helpful. Yes, it is nice to have a group of people we can 'out' ourselves to, and who understand what we go through and with whom we don't have to keep using euphemisms and veiled descriptions!
It's getting to be spring, I want to go camping, and I'm tired of having to worry about all this!!
Thanks again for all the kindness and help, and I'll keep absorbing all the stories here.
Tex, thanks for the caring that is evident in your posts, your encouragement, and the tip about dairy. I actually eat little dairy, finding that I just don't have much of a taste for it. I got some Parmesan cheese last week, and ended up sprinkling it on top of my pup's food because it wasn't appealing--same with yogurt. I have soy milk, but I think soy causes problems. I belong to a buying club and can get hemp milk in bulk, so I may try that. It's encouraging to know that people have worked with diet and had success.
Polly, I was also a vegetarian for a long time, and have had the same thought as you, that it might have caused some of the sensitivities. My sister and I, who had both been vegetarians, both started feeling a lot better when we added meat to our diets. Like you, if I can be outside a lot, help some in the community, and study/practice Dharma, life seems balanced and good! I hope that the doctor, now that she sees how things are, will be open to my suggestion. I also have a chronic kidney disease, so prolonged dehydration is quite dangerous for me, so doing something is important.
Gloria, I found reading through your account really encouraging and helpful. Yes, it is nice to have a group of people we can 'out' ourselves to, and who understand what we go through and with whom we don't have to keep using euphemisms and veiled descriptions!
It's getting to be spring, I want to go camping, and I'm tired of having to worry about all this!!
Thanks again for all the kindness and help, and I'll keep absorbing all the stories here.