Hi Tex,
I've been looking for a possible poll regarding time frame for remission. I thought that could be both encouraging and discouraging, but also very realistic for newbies.
Question (something like this) : "How long time passed from starting diet until you were in remission? (By 'remission' I mean how long before people felt they had their lives back, but still had to follow the diet)
1 year
2 years
3-4 years
etc
Of course, my questions are not written in proper English, but do you think such a poll would be useful?
Lilia
A question for Tex re a new poll
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
A question for Tex re a new poll
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Lilja,
Yes, that would probably be a very useful poll. But here's the problem. Everyone has a different opinion of what remission means to them. This is because for many, the GI symptoms of D, abdominal pain, or nausea might be the worst symptoms. For others, the worst symptoms might be fatigue, joint or muscle pain, or brain fog.
Remission from GI symptoms can usually be accomplished within half a year or less, but remission from brain fog and fatigue typically takes a couple of years. Also, if one is taking budesonide, remission from GI symptoms will only take a few days to a week or so.
So the question is, at what point does one have her or his life back? If you can tell me how we should determine when we have our life back, I will be very happy to set up a poll. IOW, the results of a poll are only as useful as the way the questions are asked, and the choices that are offered as response options.
Tex
Yes, that would probably be a very useful poll. But here's the problem. Everyone has a different opinion of what remission means to them. This is because for many, the GI symptoms of D, abdominal pain, or nausea might be the worst symptoms. For others, the worst symptoms might be fatigue, joint or muscle pain, or brain fog.
Remission from GI symptoms can usually be accomplished within half a year or less, but remission from brain fog and fatigue typically takes a couple of years. Also, if one is taking budesonide, remission from GI symptoms will only take a few days to a week or so.
So the question is, at what point does one have her or his life back? If you can tell me how we should determine when we have our life back, I will be very happy to set up a poll. IOW, the results of a poll are only as useful as the way the questions are asked, and the choices that are offered as response options.
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.
Tex
I have been wondering that myself how long but I have come to the conclusion that my body will tell me.
We are all different and that would be A tough poll to set up.
Speaking of budesonide it never masked my food intolerance I wonder what percent of the people it really helped? I believe diet change is the only thing that started my healing.
Terry
I have been wondering that myself how long but I have come to the conclusion that my body will tell me.
We are all different and that would be A tough poll to set up.
Speaking of budesonide it never masked my food intolerance I wonder what percent of the people it really helped? I believe diet change is the only thing that started my healing.
Terry
Tex,
I agree. That would implicate a lot of questions and possibly impossible to put in a questionnaire. In my world some of these questions would be:
When did you go from an excessive amount of toilet visits, i.e. from 30, to 1-2?
When did you start to feel that you could think clearly and that the brain fog disappeared?
When did the nausea disappear?
When did you feel that you could follow and participate in a conversation?
When did you start seeing people in the eyes? (This was a scary discovery; I couldn’t even look my own children in the eyes, and I don’t know why)
When did you go from exhaustion to a feeling of «normality»?
When did you feel that you had solid ground under your feet, without having the feeling of falling?
When did words come easily, and you didn’t have to search for words?
When did you start having interest in the world around you; i.e. the news and what happened in the world?
When did it turn, from the feeling of fading away and giving up, to the feeling of wanting to continue to live?
When did the feeling of completeley loneliness, and being left to yourself, disappear?
Lilia
I agree. That would implicate a lot of questions and possibly impossible to put in a questionnaire. In my world some of these questions would be:
When did you go from an excessive amount of toilet visits, i.e. from 30, to 1-2?
When did you start to feel that you could think clearly and that the brain fog disappeared?
When did the nausea disappear?
When did you feel that you could follow and participate in a conversation?
When did you start seeing people in the eyes? (This was a scary discovery; I couldn’t even look my own children in the eyes, and I don’t know why)
When did you go from exhaustion to a feeling of «normality»?
When did you feel that you had solid ground under your feet, without having the feeling of falling?
When did words come easily, and you didn’t have to search for words?
When did you start having interest in the world around you; i.e. the news and what happened in the world?
When did it turn, from the feeling of fading away and giving up, to the feeling of wanting to continue to live?
When did the feeling of completeley loneliness, and being left to yourself, disappear?
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Terry,
We all seem to respond differently to budesonide. For some people, it will mask their symptoms no matter what they are eating. But as you and many others have found, that's not true for everyone. For some people, at least gluten and sometimes 1 or more of the other main food sensitivities must be eliminated (except for trace amouints). And for others, carefully avoiding virtually all of their food sensitivities is necessary, even when taking budesonide, in order to achieve remission.
I have wondered if the effectiveness of budesonide might be closely linked with one's vitamin D level, because according to my research (as I noted in my book about vitamin D), corticosteroids don't appear to actually suppress inflammation. What they do is to express vitamin D receptors, suggesting that the inflammation is actually suppressed by the action of the active form of vitamin D on the immune system. IOW, the active form of vitamin D is capable of suppressing the production and activation of mast cells, and the corticosteroids exploit vitamin D's powers over mast cells.
That would imply that if one's vitamin D level is low, or if one's ability to convert 25(OH)D into the active form (1,25[OH]2D), is compromised, then corticosteroids would not be effective. That theory is backed up by indirect research references in the book, but of course it has never been verified by specific, dedicated research. I'm sure there are probably other possible explanations, but that is my theory as to why budesonide may not be effective for some of us.
Tex
We all seem to respond differently to budesonide. For some people, it will mask their symptoms no matter what they are eating. But as you and many others have found, that's not true for everyone. For some people, at least gluten and sometimes 1 or more of the other main food sensitivities must be eliminated (except for trace amouints). And for others, carefully avoiding virtually all of their food sensitivities is necessary, even when taking budesonide, in order to achieve remission.
I have wondered if the effectiveness of budesonide might be closely linked with one's vitamin D level, because according to my research (as I noted in my book about vitamin D), corticosteroids don't appear to actually suppress inflammation. What they do is to express vitamin D receptors, suggesting that the inflammation is actually suppressed by the action of the active form of vitamin D on the immune system. IOW, the active form of vitamin D is capable of suppressing the production and activation of mast cells, and the corticosteroids exploit vitamin D's powers over mast cells.
That would imply that if one's vitamin D level is low, or if one's ability to convert 25(OH)D into the active form (1,25[OH]2D), is compromised, then corticosteroids would not be effective. That theory is backed up by indirect research references in the book, but of course it has never been verified by specific, dedicated research. I'm sure there are probably other possible explanations, but that is my theory as to why budesonide may not be effective for some of us.
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.
Lilia,
The problem is that the answers to the questions you posed occur at different times, and in a poll, only a single answer can be selected.
I'll give this some thought, and see if I can come up with a poll that assimilates all these possibilities into a set of options that will allow a meaningful selection.
Thanks,
Tex
The problem is that the answers to the questions you posed occur at different times, and in a poll, only a single answer can be selected.
I'll give this some thought, and see if I can come up with a poll that assimilates all these possibilities into a set of options that will allow a meaningful selection.
Thanks,
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.
Thank you, Textex wrote:Lilia,
The problem is that the answers to the questions you posed occur at different times, and in a poll, only a single answer can be selected.
I'll give this some thought, and see if I can come up with a poll that assimilates all these possibilities into a set of options that will allow a meaningful selection.
Thanks,
Tex
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Tex
I would say that your vitamin D theory is absouletly correct since my vitamin levels was never A concern of my GI or PCP I had to request the blood work my self and it was A little late in the game to correct it my vitamin D3 was at 11 .I am still at 7000 iu A day and will be lowering the dose soon. Thanks Tex.
Lilia
I read your post and never realized what I have gone through it was a never ending battle and all of your questions hit home base with me.
Thanks
Terry
PS Brain fog was the pitts
I would say that your vitamin D theory is absouletly correct since my vitamin levels was never A concern of my GI or PCP I had to request the blood work my self and it was A little late in the game to correct it my vitamin D3 was at 11 .I am still at 7000 iu A day and will be lowering the dose soon. Thanks Tex.
Lilia
I read your post and never realized what I have gone through it was a never ending battle and all of your questions hit home base with me.
Thanks
Terry
PS Brain fog was the pitts
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
This post has heightened my appreciation for finding this site so soon after diagnosis...
Luckily for me the MC Dx was not a dark zoned challenge. my MC Dx and finding this site within 48hrs of Dx, answering so many questions about years of niggling health issues, I found a wonderful bunch of people that 'got it' and enhanced my life.
The friendships, conversations, support, have flourished over the 5.5 years and can not imagine my life without the friends I found here.
I can honestly say that getting MC enhanced my life way more than it took away or changed
An aspect to considering a poll like this - Majority of people here dont just have MC, they have multiple medical conditions... that inter-mingle with the MC. Some of the conditions were there before MC, some came after,
(thyroid, hormones, nutritional deficiencies, structural issues from previous illness, etc etc)
Remission or wellness is a hard thing to 'quantify' via a poll.... especially when not all triggers can be removed or minimised (ie stress, environmental triggers etc)
remission or wellness is also quite fragile - for some after months or even years of 'remission' a traumatic event can restart the MC chronic state.
The other aspect that has been frequently mentioned in the past 12 months or so is nutritional deficiencies (methylation etc)
IMO wellness and minimal symptoms comes once each individual fixes their nutritional deficiencies, and there kinda is no definable/quantifiable period.
For some this may only take 6 months, for others it may take 1-2 years, and for others it can take longer, or to some extent be almost endless ie they will always be fixing nutritional deficiencies depending on how many health conditions, and how long they have had chronic inflammation, if they are in a stressful or environmentally charged environment that will continue to put stress on their system
What MC/Wellness journey has taught me in the past 5 years is
- it is, what it is for each individual ... trying to benchmark yourself against others here, you are not comparing apples with apples
- there is no right way or wrong way, there is whatever works for that individual....
- and it is about progress, not perfection.
Luckily for me the MC Dx was not a dark zoned challenge. my MC Dx and finding this site within 48hrs of Dx, answering so many questions about years of niggling health issues, I found a wonderful bunch of people that 'got it' and enhanced my life.
The friendships, conversations, support, have flourished over the 5.5 years and can not imagine my life without the friends I found here.
I can honestly say that getting MC enhanced my life way more than it took away or changed
An aspect to considering a poll like this - Majority of people here dont just have MC, they have multiple medical conditions... that inter-mingle with the MC. Some of the conditions were there before MC, some came after,
(thyroid, hormones, nutritional deficiencies, structural issues from previous illness, etc etc)
Remission or wellness is a hard thing to 'quantify' via a poll.... especially when not all triggers can be removed or minimised (ie stress, environmental triggers etc)
remission or wellness is also quite fragile - for some after months or even years of 'remission' a traumatic event can restart the MC chronic state.
The other aspect that has been frequently mentioned in the past 12 months or so is nutritional deficiencies (methylation etc)
IMO wellness and minimal symptoms comes once each individual fixes their nutritional deficiencies, and there kinda is no definable/quantifiable period.
For some this may only take 6 months, for others it may take 1-2 years, and for others it can take longer, or to some extent be almost endless ie they will always be fixing nutritional deficiencies depending on how many health conditions, and how long they have had chronic inflammation, if they are in a stressful or environmentally charged environment that will continue to put stress on their system
What MC/Wellness journey has taught me in the past 5 years is
- it is, what it is for each individual ... trying to benchmark yourself against others here, you are not comparing apples with apples
- there is no right way or wrong way, there is whatever works for that individual....
- and it is about progress, not perfection.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Terry,
Budesonide completely masked the symptoms for me. Within a week of starting Entocort, I had normans, and my stomach wasn't roiling any more. That last is actually what made me realize that my life for the preceding 18 months had been very abnormal; I had gotten so used to the roiling that it just seemed normal. With that gone, and the diarrhea stopped, I realized that I needed to do something to keep it like that. Three weeks after going off Entocort (cold-turkey. I hadn't found this board yet.) the symptoms all came back, and this sent me on a search to find a solution that would get at the root cause of the problem, not a medicine that would just mask it all.
Lilja and Tex,
I don't use the word remission at all because in my mind remission means that something is really gone, if only temporarily. So I consider my MC controlled, not in remission. It's still there, and as long as I don't set it off, it's okay, kind of like a tinder box.
But, am I able to go about my life? Yes. I have to watch what I eat, and potlucks and picnics are not fun, and I rarely eat out, but as long as I control my food and have Imodium handy for when I need to make sure I'm not going to need a bathroom, life is fine.
As a side note, I started using magnesium spray in January, and have gained about 6 pounds. In the past I have struggled to keep my weight as high as 120, and now I am closer to 125. And my clothes are too tight!
From looking at Lilja's questions, I see that a people have a lot of different symptoms. Many of those, like nausea, or not being able to look people in the eye, I never experienced at all.
Budesonide completely masked the symptoms for me. Within a week of starting Entocort, I had normans, and my stomach wasn't roiling any more. That last is actually what made me realize that my life for the preceding 18 months had been very abnormal; I had gotten so used to the roiling that it just seemed normal. With that gone, and the diarrhea stopped, I realized that I needed to do something to keep it like that. Three weeks after going off Entocort (cold-turkey. I hadn't found this board yet.) the symptoms all came back, and this sent me on a search to find a solution that would get at the root cause of the problem, not a medicine that would just mask it all.
Lilja and Tex,
I don't use the word remission at all because in my mind remission means that something is really gone, if only temporarily. So I consider my MC controlled, not in remission. It's still there, and as long as I don't set it off, it's okay, kind of like a tinder box.
But, am I able to go about my life? Yes. I have to watch what I eat, and potlucks and picnics are not fun, and I rarely eat out, but as long as I control my food and have Imodium handy for when I need to make sure I'm not going to need a bathroom, life is fine.
As a side note, I started using magnesium spray in January, and have gained about 6 pounds. In the past I have struggled to keep my weight as high as 120, and now I am closer to 125. And my clothes are too tight!
From looking at Lilja's questions, I see that a people have a lot of different symptoms. Many of those, like nausea, or not being able to look people in the eye, I never experienced at all.
Martha
Martha,
When my magnesium deficiency began to become more acute, (even before the antibiotic reaction last spring brought it to my attention by even more severely depleting my magnesium), I was losing an average of about 2 pounds every week. I couldn't figure out why I continued to lose weight, no matter what I ate.
Your post confirms what I suspected, because after I boosted my magnesium intake by starting to use a magnesium spray, my weight has been increasing at least as fast as it was decreasing prior to that change. Obviously magnesium has a profound effect on metabolism.
Thank you for your insight, and for sharing that information.
Tex
When my magnesium deficiency began to become more acute, (even before the antibiotic reaction last spring brought it to my attention by even more severely depleting my magnesium), I was losing an average of about 2 pounds every week. I couldn't figure out why I continued to lose weight, no matter what I ate.
Your post confirms what I suspected, because after I boosted my magnesium intake by starting to use a magnesium spray, my weight has been increasing at least as fast as it was decreasing prior to that change. Obviously magnesium has a profound effect on metabolism.
Thank you for your insight, and for sharing that information.
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.
Lilja,
I know just how you feel. I wanted some answers, too, because it can be so disabilitating to have this disease!
But, as everyone has mentioned, there is no cookie cutter reply because we all heal at different rates.
I did want to comment on the nausea question.....I attributed mine to histamines at first, but I think my real issue was lack of stomach acid. I take betaine hcl, and digestive enzymes with my meals now, and haven't had any queasiness.
Linda
I know just how you feel. I wanted some answers, too, because it can be so disabilitating to have this disease!
But, as everyone has mentioned, there is no cookie cutter reply because we all heal at different rates.
I did want to comment on the nausea question.....I attributed mine to histamines at first, but I think my real issue was lack of stomach acid. I take betaine hcl, and digestive enzymes with my meals now, and haven't had any queasiness.
Linda
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....