What would you consider remission?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
What would you consider remission?
You all give me some hope when I read about remission. But what would you categorize as remission? No diarrhea> No flare ups? Are you able to gp back to a normal diet? Occasionally have a slice of pizza? Or is it a continuous balance every single day and thinking about exactly what you eat? I'm soo frustrated. I gave up dairy a year ago. And felt great. Then things got bad again so I ended up getting a colonoscopy and was diagnosed with MC. My doctor said it wasn't a big deal and gave me no advice, nothing. After having more GI problems, I found this site. I put two and two together and thought my stomach aches could be from gluten. I went gluten free 6 months ago and immediately felt amazing. About 2 months ago, the gas and weird poops were coming back. I feel like I will continually have to eliminate new foods. That someday I will be slowly taking away more and more new foods that bother me. If I slip just a little bit, like eat a food that I thought was safe, but had a hidden ingredient - it can screw up my whole weekend, and then take me a couple of weeks of eating bland food and being so careful to get my stomach to settle down. I am beyond frustrated!!!
Carol,
For me, remission is feeling normal and not having to worry about symptoms, or the location of the nearest bathroom. But in order to do that, I have to constantly avoid all traces of the foods that cause my immune system to produce antibodies, and minimize the foods that irritate my digestive system (such as too much sugar or fiber). For me that's gluten, dairy, soy, oats, nuts (although I can tolerate nut butters — except for peanut butter), and moderate to large amounts of sugar. I have to avoid the main foods and their derivatives not only in my diet, but in medications, supplements, and products such as lotions, shampoos, toothpaste, etc.
But as long as I avoid those foods/ingredients, I am fine and I feel great. I would venture to guess that almost everyone here has their own personally customized interpretation of remission.
Tex
For me, remission is feeling normal and not having to worry about symptoms, or the location of the nearest bathroom. But in order to do that, I have to constantly avoid all traces of the foods that cause my immune system to produce antibodies, and minimize the foods that irritate my digestive system (such as too much sugar or fiber). For me that's gluten, dairy, soy, oats, nuts (although I can tolerate nut butters — except for peanut butter), and moderate to large amounts of sugar. I have to avoid the main foods and their derivatives not only in my diet, but in medications, supplements, and products such as lotions, shampoos, toothpaste, etc.
But as long as I avoid those foods/ingredients, I am fine and I feel great. I would venture to guess that almost everyone here has their own personally customized interpretation of remission.
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.
Thanks Tex for responding so quickly. I'm feeling very defeated at this point. But everyone here is so helpful. I had settled in to life without dairy and gluten. But the thought that it could be more things bothering me has freaked me out. I'm reading others posts about not eating any spices, soy, nuts or corn, etc. And thinking about what that would be like with a really stressful job and being the mom of two busy kids. Well I'm just overwhelmed. I will slowly navigate through this. My next steps: I ordered magnesium lotion and the recommended glycinate, looking into a naturopath doctor, and will probably will order the entero lab tests. I've got lots of questions about that but will post the in that section. Thanks again for your help!!!
Hi Carol,
Welcome to our group! Have you read the book Tex wrote about MC? Aside from the wonderful advice I received on this website, the book and the Enterolab results were the most helpful! Info about the book is in the upper right hand corner.
I was diagnosed two years ago and have been on a super careful diet ever since. I started with an elimination diet and slowly added foods back in (and still do). Overall, I feel so much better. I still have some gastrointestinal issues but the diarrhea is gone (unless there was something hidden somewhere). It is wonderful to be able to get out of the house and be active again. So worth it!
Love, Patricia
Welcome to our group! Have you read the book Tex wrote about MC? Aside from the wonderful advice I received on this website, the book and the Enterolab results were the most helpful! Info about the book is in the upper right hand corner.
I was diagnosed two years ago and have been on a super careful diet ever since. I started with an elimination diet and slowly added foods back in (and still do). Overall, I feel so much better. I still have some gastrointestinal issues but the diarrhea is gone (unless there was something hidden somewhere). It is wonderful to be able to get out of the house and be active again. So worth it!
Love, Patricia
Carol, as a newbie I was just going to ask the same question! What is 'healed'?
I'm realizing that my LC will never be cured, only managed. I guess I'm resigned to a strict diet and small, frequent meals from now on. It's worth it to feel 'normal'.
I only had WD and pain for 2 months, and then just pain and burping for the following month. Now in month 4, I feel fine. Seriously! Normalish BMs usually just once a day, no pain (just discomfort if I eat too much at one meal). How can I be 'healed' or 'in remission' so soon? It's too good to be true but I'm enjoying it!
I'm realizing that my LC will never be cured, only managed. I guess I'm resigned to a strict diet and small, frequent meals from now on. It's worth it to feel 'normal'.
I only had WD and pain for 2 months, and then just pain and burping for the following month. Now in month 4, I feel fine. Seriously! Normalish BMs usually just once a day, no pain (just discomfort if I eat too much at one meal). How can I be 'healed' or 'in remission' so soon? It's too good to be true but I'm enjoying it!
Hazel
Carol,
Diet diversity for the masses is a very recent innovation in terms of evolution. Royalty traditionally had diversified diets, but almost everyone else ate a very simple and relatively bland diet. At the dawning of the neolithic age, people didn't begin eating wheat and dairy products because they loved diversity — they changed their diet because it was better than starving to death as wild game populations became too depleted to sustain the growing human population on the planet. So they were forced to settle down and begin farming their food.
The main reason why humans have survived for so many years while so many other species have been phased out by evolution (99 % of all species that have ever lived on this planet have been extinct for centuries) is because humans are so adaptable. We're omnivorous, and the really neat aspect of our adaptability is that we soon learn to prefer our current diet after we have been eating it for a while. You will experience that yourself, if you are willing to face the future with an optimistic outlook and an open mind. A diagnosis of MC is not the end of the world — it's simply the beginning of a new, challenging, and enlightening period of our life. And as cruel as this disease may seem at first, eventually you will come to appreciate it as a positive influence on your outlook on life, and your health in general.
Even as recently as 100–150 years ago, most people in this country ate a simple, basic diet very similar to what most of us here eat except that they included wheat flour and milk in their diet. I eat the same basic diet today that I grew up eating (60 + years ago), sans wheat flour, added sugar, and dairy products. And by excluding those items from my diet, I have greatly benefited my long-term health and my prospects for longevity, because despite the hype that we are continually fed by the food processing industry, our government, and various so-called health "experts", none of those foods are actually nutritious additions to our diet. Everyone is better off without them, with or without MC.
All that said, you are quite correct — MC is an unforgiving and very depressing disease. Adapting to a new lifestyle when you are working full time, plus raising a family (which is another full-time job), is a huge challenge. And you will probably need some help from your family in order to do it because this disease drains our energy and clouds our brain with fog. Learning to live with this disease is typically the greatest challenge that most of us will ever face during our lifetime. But learning how to control the disease is vital in order to ensure that we will be able to enjoy a quality lifestyle in the future.
Once we understand and accept what it takes to recover, so that we can formulate a recovery plan, this in itself lowers our stress level and sets the stage for recovery. And once we taste success, and recognize that we can indeed get our life back, everything becomes easier and our routine soon becomes second nature.
As Patricia and Hazel have posted, you can do it, and everyone here will help in any way we can.
Tex
Diet diversity for the masses is a very recent innovation in terms of evolution. Royalty traditionally had diversified diets, but almost everyone else ate a very simple and relatively bland diet. At the dawning of the neolithic age, people didn't begin eating wheat and dairy products because they loved diversity — they changed their diet because it was better than starving to death as wild game populations became too depleted to sustain the growing human population on the planet. So they were forced to settle down and begin farming their food.
The main reason why humans have survived for so many years while so many other species have been phased out by evolution (99 % of all species that have ever lived on this planet have been extinct for centuries) is because humans are so adaptable. We're omnivorous, and the really neat aspect of our adaptability is that we soon learn to prefer our current diet after we have been eating it for a while. You will experience that yourself, if you are willing to face the future with an optimistic outlook and an open mind. A diagnosis of MC is not the end of the world — it's simply the beginning of a new, challenging, and enlightening period of our life. And as cruel as this disease may seem at first, eventually you will come to appreciate it as a positive influence on your outlook on life, and your health in general.
Even as recently as 100–150 years ago, most people in this country ate a simple, basic diet very similar to what most of us here eat except that they included wheat flour and milk in their diet. I eat the same basic diet today that I grew up eating (60 + years ago), sans wheat flour, added sugar, and dairy products. And by excluding those items from my diet, I have greatly benefited my long-term health and my prospects for longevity, because despite the hype that we are continually fed by the food processing industry, our government, and various so-called health "experts", none of those foods are actually nutritious additions to our diet. Everyone is better off without them, with or without MC.
All that said, you are quite correct — MC is an unforgiving and very depressing disease. Adapting to a new lifestyle when you are working full time, plus raising a family (which is another full-time job), is a huge challenge. And you will probably need some help from your family in order to do it because this disease drains our energy and clouds our brain with fog. Learning to live with this disease is typically the greatest challenge that most of us will ever face during our lifetime. But learning how to control the disease is vital in order to ensure that we will be able to enjoy a quality lifestyle in the future.
Once we understand and accept what it takes to recover, so that we can formulate a recovery plan, this in itself lowers our stress level and sets the stage for recovery. And once we taste success, and recognize that we can indeed get our life back, everything becomes easier and our routine soon becomes second nature.
As Patricia and Hazel have posted, you can do it, and everyone here will help in any way we can.
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.
Dear Carol,
I don't use the term 'remission.' My mental image of remission is dancing through a field of flowers under a soft blue sky. Metaphorically, that is, of course! And going anywhere, doing anything, eating anything, that I could before.
And that just isn't going to happen. I prefer to use the term 'controlled.' I have a chronic disease that isn't going to go away, and I control it by being very careful of my diet. I don't eat any gluten, oats, dairy, soy, or other legumes. Six years into the diet, those things don't tempt me at all any more. I know they will make me sick, so I don't want them.
I am fortunate that I can eat a lot of things that some other MCers can't. Non-gluten grains are fine, I can eat nuts, and any non-leguminous vegetables. It's a pain to have to check ingredients in everything, but I do it anyway.
Eating out is a challenge, and we don't do it often. Potlucks and invitations to other people's houses often seem like more trouble than they are worth. But most of my friends have been very understanding when I give them a list of things I can't eat, and more importantly, suggest that they cook very simply, in an effort to keep away from hidden gluten, dairy, soy, etc. You know, like "Please serve plain white rice, or boiled potatoes, boiled or steamed vegetables but not beans or peas, and plain meat seasoned with only salt and pepper, and cooked in olive oil or coconut oil. Or if you'd rather, I can bring my own food, and the rest of you can eat what you cook."
My kids are grown now, so I only cook for my husband and myself. I cook only things that I can eat, but my husband does make his own toast in his own toaster. He's really careful not to touch anything with the bread, or with his hands after he has touched the bread. When our kids and grandkids come, they eat what I cook, and they like it fine.
I recommend the Enterolab tests. Having a definite starting place and the back-up of "experts" rather than just something I decided on my own gave me the impetus to make the diet changes and stick with them.
Martha
I don't use the term 'remission.' My mental image of remission is dancing through a field of flowers under a soft blue sky. Metaphorically, that is, of course! And going anywhere, doing anything, eating anything, that I could before.
And that just isn't going to happen. I prefer to use the term 'controlled.' I have a chronic disease that isn't going to go away, and I control it by being very careful of my diet. I don't eat any gluten, oats, dairy, soy, or other legumes. Six years into the diet, those things don't tempt me at all any more. I know they will make me sick, so I don't want them.
I am fortunate that I can eat a lot of things that some other MCers can't. Non-gluten grains are fine, I can eat nuts, and any non-leguminous vegetables. It's a pain to have to check ingredients in everything, but I do it anyway.
Eating out is a challenge, and we don't do it often. Potlucks and invitations to other people's houses often seem like more trouble than they are worth. But most of my friends have been very understanding when I give them a list of things I can't eat, and more importantly, suggest that they cook very simply, in an effort to keep away from hidden gluten, dairy, soy, etc. You know, like "Please serve plain white rice, or boiled potatoes, boiled or steamed vegetables but not beans or peas, and plain meat seasoned with only salt and pepper, and cooked in olive oil or coconut oil. Or if you'd rather, I can bring my own food, and the rest of you can eat what you cook."
My kids are grown now, so I only cook for my husband and myself. I cook only things that I can eat, but my husband does make his own toast in his own toaster. He's really careful not to touch anything with the bread, or with his hands after he has touched the bread. When our kids and grandkids come, they eat what I cook, and they like it fine.
I recommend the Enterolab tests. Having a definite starting place and the back-up of "experts" rather than just something I decided on my own gave me the impetus to make the diet changes and stick with them.
Martha
Martha
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Here are some previous discussions on this topic
this one has good points and links to previous discussions
http://www.perskyfarms.com/phpBB2/viewt ... =remission
http://www.perskyfarms.com/phpBB2/viewt ... =remission
http://www.perskyfarms.com/phpBB2/viewt ... =remission
this one has good points and links to previous discussions
http://www.perskyfarms.com/phpBB2/viewt ... =remission
http://www.perskyfarms.com/phpBB2/viewt ... =remission
http://www.perskyfarms.com/phpBB2/viewt ... =remission
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Martha said
Brandy
I meant to post on this thread awhile back. I think Martha's comments are really profound. Martha's experiences are my experiences exactly.I don't use the term 'remission.' My mental image of remission is dancing through a field of flowers under a soft blue sky. Metaphorically, that is, of course! And going anywhere, doing anything, eating anything, that I could before.
And that just isn't going to happen. I prefer to use the term 'controlled.' I have a chronic disease that isn't going to go away, and I control it by being very careful of my diet. I don't eat any gluten, oats, dairy, soy, or other legumes. Six years into the diet, those things don't tempt me at all any more. I know they will make me sick, so I don't want them.
I am fortunate that I can eat a lot of things that some other MCers can't. Non-gluten grains are fine, I can eat nuts, and any non-leguminous vegetables. It's a pain to have to check ingredients in everything, but I do it anyway.
Eating out is a challenge,
Brandy
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I agree. Like Brandy and Martha I keep things under control by avoiding all the foods that make me sick. I actually don't find it very hard to do. I took a 4 mile walk this monring, just ahead of the predicted snow storm (it's snowing now). This would have been unthinkable a few years ago when stepping out the door felt dangerous. I'm happy to keep eating this way for the rest of my life. I've been able to add back raw vegetables along with lightly cooked ones. I continue to be gf, df, sf, ef and I avoid chicken and beef. It doesn't feel like a sacrifice to me. I am grateful that with the help of this forum I figured it out. I'm not going to mess with success.brandy wrote:Martha said
I meant to post on this thread awhile back. I think Martha's comments are really profound. Martha's experiences are my experiences exactly.I don't use the term 'remission.' My mental image of remission is dancing through a field of flowers under a soft blue sky. Metaphorically, that is, of course! And going anywhere, doing anything, eating anything, that I could before.
And that just isn't going to happen. I prefer to use the term 'controlled.' I have a chronic disease that isn't going to go away, and I control it by being very careful of my diet. I don't eat any gluten, oats, dairy, soy, or other legumes. Six years into the diet, those things don't tempt me at all any more. I know they will make me sick, so I don't want them.
I am fortunate that I can eat a lot of things that some other MCers can't. Non-gluten grains are fine, I can eat nuts, and any non-leguminous vegetables. It's a pain to have to check ingredients in everything, but I do it anyway.
Eating out is a challenge,
Brandy
Jean
I agree with the others........not really remission, but controlled.
I, lately, have been a little out of control. I've tried some things that my body doesn't like, and it let me know. So, I'm going back to my chicken and rice and banana safe foods for a little while.
I do think it's really different for every single person. I've never had what I would consider a normal BM since my diagnosis, but as long as it is not the water diarrhea that keeps me chained to the bathroom, I guess I can live with that.
I, lately, have been a little out of control. I've tried some things that my body doesn't like, and it let me know. So, I'm going back to my chicken and rice and banana safe foods for a little while.
I do think it's really different for every single person. I've never had what I would consider a normal BM since my diagnosis, but as long as it is not the water diarrhea that keeps me chained to the bathroom, I guess I can live with that.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Gabes,Gabes-Apg wrote:For me, i think the MC is the symptom of my other health issues - not the root cause.
I get MC issues when inflammation levels are too high and nutrients levels are imbalanced
I am wondering how you know that nutrient levels are imbalanced. Is it through testing, symptoms, a combination of the two? I supplement a variety of things but I'm just really guessing, taking stabs in the dark, using the tracking of my foods to guess at things.
Jean
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
both Jean
testing - regular blood tests for things like zinc, B12, etc urine tests for iodine etc Hair mineral analysis to look at ratios of minerals etc
testing - via chiro /kinesiology treatments/assessments
symptoms - new symptoms or intensity of old symptoms - via my nutrient bible textbook, my own research linked to my health issues and data (genetic data, nutrient info linked to my health issues / toxins etc, and my chiro/kineisologist practitioner
i am very lucky that my practitioner is super smart on cell health, functional medicine, methylation etc, proactive, and gives me quality time - we collaborate our knowledge and what I think is the issue is confirmed by her assessment.
Further; lots of what we discuss here and we have learnt here (thanks Tex) I share with her and it has helped her a bit with treating some of her complex children patients. Especially things like mast cell/histamine, gut issues that dont respond to normal treatment protocol etc.
testing - regular blood tests for things like zinc, B12, etc urine tests for iodine etc Hair mineral analysis to look at ratios of minerals etc
testing - via chiro /kinesiology treatments/assessments
symptoms - new symptoms or intensity of old symptoms - via my nutrient bible textbook, my own research linked to my health issues and data (genetic data, nutrient info linked to my health issues / toxins etc, and my chiro/kineisologist practitioner
i am very lucky that my practitioner is super smart on cell health, functional medicine, methylation etc, proactive, and gives me quality time - we collaborate our knowledge and what I think is the issue is confirmed by her assessment.
Further; lots of what we discuss here and we have learnt here (thanks Tex) I share with her and it has helped her a bit with treating some of her complex children patients. Especially things like mast cell/histamine, gut issues that dont respond to normal treatment protocol etc.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
jessica329
- Adélie Penguin
- Posts: 214
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
I've been dealing with this crap (LOL!!) since August 4, 2012. I remember the date so vividly because I was supposed to go to a Red Sox game that day. Anyways, my definition of remission is no diarrhea, no intense stomach pain/burning, no extreme fatigue, no intense nausea/dry heaving and generally not feeling like I'm one foot in the grave. For me, I needed a combination of diet and the right meds to get my most recent flare under control. I follow a gluten free, dairy free, nut free and very low to no ruffage diet (meaning I might have a salad a few times a year). This is just how I must eat for the rest of my life. I don't mind because I prefer eating like this and having a better quality of life. Stress is a big factor for me and can trigger a monster flare.
Jessica
Lymphocytic colitis August 2012
Lymphocytic colitis August 2012