Hi
I am new and I am doing some research.
I have many many results that more then 65% op people with MC go into remission after some years.
The rates are very much higher then crohn or UC.
Is this true? Or do they mean the remission rate is that high on medication?
This would mean by doing notthing.. the low grade inflammation in colon will down regulate by the immune system in time by itself?
I know GF and other diets increase the remission rates.
But I read a lot of google link talking about great prognosis for MC?!
Is this true?
greets ken
Remission comes for everybody??
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Ken,
Welcome to the discussion board. Yes, the remission rate for patients using budesonide, for example, is at least 65 %. However, most patients find that when they stop taking the medication, they suffer a relapse of symptoms within a few weeks or so. And taking a corticosteroid for long-term use (many years) is risky, because of the risk of osteoporosis and adrenal damage. GI specialists and researchers like to pretend that they understand the disease, and they know how to treat it effectively. But they do not. What happens is that eventually patients stop going back to doctors (because the doctor's recommendations provide no relief), and after they stop going to the doctor, the doctor assumes that they are cured. They're not cured. They're just frustrated and tired of being misled.
Most of the members of this board who have been living with this disease for at least 10 or 15 years or more (including me) would argue that the idea that microscopic colitis eventually downregulates on its own, and ceases to be a problem is a ridiculous claim. That might happen to maybe 1 or 2 patients in a hundred, but it certainly does not happen to most of us. Most of us have to treat the disease every day, if we want to keep it under control, and we do that by avoiding the foods in our diet that cause the inflammation. If we avoid all of the foods that cause our immune system to produce antibodies, our symptoms will slowly resolve, and our gut will begin to heal. If we continue to eat those foods, we will continue to react (for the rest of our lives, if we don't change our diet).
The claim that MC is self-regulating was started by a couple of medical research articles published about 15 or 20 years ago. The research was done by carefully selecting subjects to fit the goals of the researchers, to guarantee that the results would be what they wanted. Therefore, the claims in the results were bogus, but doctors (and almost everyone else who doesn't know any better) have been pointing to those faulty reports for decades, and repeating the mistaken claims.
Like any other IBD, there is no cure for MC, but the symptoms can be controlled by proper treatment.
Again, welcome aboard, and please feel free to ask anything. If you have been diagnosed with MC, and you are having symptoms, and you choose to do nothing to treat it, please keep us posted on your progress after a few years, because we are always open to any new treatments that actually work to control MC.
Tex
Welcome to the discussion board. Yes, the remission rate for patients using budesonide, for example, is at least 65 %. However, most patients find that when they stop taking the medication, they suffer a relapse of symptoms within a few weeks or so. And taking a corticosteroid for long-term use (many years) is risky, because of the risk of osteoporosis and adrenal damage. GI specialists and researchers like to pretend that they understand the disease, and they know how to treat it effectively. But they do not. What happens is that eventually patients stop going back to doctors (because the doctor's recommendations provide no relief), and after they stop going to the doctor, the doctor assumes that they are cured. They're not cured. They're just frustrated and tired of being misled.
Most of the members of this board who have been living with this disease for at least 10 or 15 years or more (including me) would argue that the idea that microscopic colitis eventually downregulates on its own, and ceases to be a problem is a ridiculous claim. That might happen to maybe 1 or 2 patients in a hundred, but it certainly does not happen to most of us. Most of us have to treat the disease every day, if we want to keep it under control, and we do that by avoiding the foods in our diet that cause the inflammation. If we avoid all of the foods that cause our immune system to produce antibodies, our symptoms will slowly resolve, and our gut will begin to heal. If we continue to eat those foods, we will continue to react (for the rest of our lives, if we don't change our diet).
The claim that MC is self-regulating was started by a couple of medical research articles published about 15 or 20 years ago. The research was done by carefully selecting subjects to fit the goals of the researchers, to guarantee that the results would be what they wanted. Therefore, the claims in the results were bogus, but doctors (and almost everyone else who doesn't know any better) have been pointing to those faulty reports for decades, and repeating the mistaken claims.
Like any other IBD, there is no cure for MC, but the symptoms can be controlled by proper treatment.
Again, welcome aboard, and please feel free to ask anything. If you have been diagnosed with MC, and you are having symptoms, and you choose to do nothing to treat it, please keep us posted on your progress after a few years, because we are always open to any new treatments that actually work to control MC.
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.
Thx for the explaination!
I also have already some big time experience because of my other illness.
I have microscopic inflammation in my bladder too.
Its pretty much in good control and I have had remission periods as long as I sticked to the diet and drink intake.
I drink only water and caffeine free tea for 2 years now.
My bladder started to heal more and more.
Meds didnt help.
I also was wondering if my bladder/immune system created immune cells against "invaders" like beer and alcohol.
Now I have some kind of confirmation from you.
I also think those microscopic inflammation disease are wrong immune responses to substances.
So it will be hard to find the right diet in the beginning for me.
Is gluten and dairy the biggest trigger?
I am willing to go gluten free.
I am already dairy free for 1 year.
I have problems with gaining weight!
Can I eat gluten free bread??
I also cant skip pattatoo (starch).
If I skip too much foods like pattatoo.. then I only live on fruits and veggies and will lose weight dramaticly.
I did try this diet and lost 15 kilos in 2 months!
So I guess i just gonna eat clean like I used to do.. except I skip gluten?
greets ken
I also have already some big time experience because of my other illness.
I have microscopic inflammation in my bladder too.
Its pretty much in good control and I have had remission periods as long as I sticked to the diet and drink intake.
I drink only water and caffeine free tea for 2 years now.
My bladder started to heal more and more.
Meds didnt help.
I also was wondering if my bladder/immune system created immune cells against "invaders" like beer and alcohol.
Now I have some kind of confirmation from you.
I also think those microscopic inflammation disease are wrong immune responses to substances.
So it will be hard to find the right diet in the beginning for me.
Is gluten and dairy the biggest trigger?
I am willing to go gluten free.
I am already dairy free for 1 year.
I have problems with gaining weight!
Can I eat gluten free bread??
I also cant skip pattatoo (starch).
If I skip too much foods like pattatoo.. then I only live on fruits and veggies and will lose weight dramaticly.
I did try this diet and lost 15 kilos in 2 months!
So I guess i just gonna eat clean like I used to do.. except I skip gluten?
greets ken
also.. There is a little bit of truth I think in down regulating by its own.
Its like 10 or 20%.
My bladder inflammation has gone milder in the years.
First.. I never could eat chocolatte.
2 years later I eated 1 bar each day for 2 weeks and my bladder didnt get any flare or irritation.
this means I could eat more and more irritating foods from the past for my bladder.
I was pretty pretty good in my norms.
Then campylobacter hit me.. and I developed IBD.
Now im back at square 0. :(
Its like 10 or 20%.
My bladder inflammation has gone milder in the years.
First.. I never could eat chocolatte.
2 years later I eated 1 bar each day for 2 weeks and my bladder didnt get any flare or irritation.
this means I could eat more and more irritating foods from the past for my bladder.
I was pretty pretty good in my norms.
Then campylobacter hit me.. and I developed IBD.
Now im back at square 0. :(
-
Betsbrooks
- Posts: 24
- Joined: Wed Apr 01, 2015 8:48 pm
- Location: Upstate New York
Hi Kenvh,
I'm interested in your mention of a microscopic bladder condition. Long before my current MC diagnosis and problems I had bladder pain and frequency which was diagnosed (by symptoms only) as interstitial cystitis. It either mostly went away on its own or was helped by some physical therapy involving relaxation, biofeedback and kegels. It only bothers me now 10 years later) during tree pollen and ragweed seasons.
Is yours diagnosed? Did they give it a name?
Betsy
I'm interested in your mention of a microscopic bladder condition. Long before my current MC diagnosis and problems I had bladder pain and frequency which was diagnosed (by symptoms only) as interstitial cystitis. It either mostly went away on its own or was helped by some physical therapy involving relaxation, biofeedback and kegels. It only bothers me now 10 years later) during tree pollen and ragweed seasons.
Is yours diagnosed? Did they give it a name?
Betsy
Dx CC March 2015
-
seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
Ken,
Others who write on this board more frequently and who can explain better than I will likely come in and tell you that diet is highly individual - it's sort of hard to know what to tell people (other than gluten seems to be a problem for most people, and most people have multiple sensitivities), except that the safest thing to do is to find a few "safe" foods and conduct a very strict elimination diet. This requires eating a very limited number of foods for some people, and when your symptoms abate, you add one back in at a time to see what happens. You also need to allow a few days in between introducing foods, because sometimes the reaction is not immediate. For me personally, most of my food sensitivities seem to be latent - in the moment, I am not running to the bathroom, but 24-48 hours later, symptoms appear.
Because I teach best what I most need to learn, I highly recommend that you be really strict about re-introducing foods if/when your symptoms abate on an elimination diet (i.e. ONLY one at a time, a pure food whole food that is a single ingredient rather than a processed food form, so you know exactly what it is you are reacting to).
Here is the link to the helpful instructions for how to generally do an elimination diet if you are unsure: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
As far as MC going away, I definitely think they need to update that information. I remember my GI telling me that when I was first diagnosed, and as a teen, I took it as: this affliction is like a cut - you don't have to take any personal responsibility for lifestyle changes, and it will just repair itself. So far, it appears that this is not true in the slightest.
I have read that some people have achieved remission on this board through dedication to a diet that works for them (does not provoke inflammation) in conjunction with medication at some points and managing stress levels.
I have had MC for 10 years and have only had very brief periods of remission (days to a week), and I believe this is mainly due to: 1) not managing stress level, 2) not managing stress levels, 3) not managing stress levels, 4) not adhering to an anti-inflammatory diet for long enough, and 5) not having a clinical response to standard medications due to the first 4 things. I also spent a good 6 years or so pretending that it would just go away on it's own...ha.
My best advice is this: sleep, relationships, work, exercise, trauma, food, other illness - these all impact our body and our resilience. If you want to really nail this and get your life back the fastest, pay attention to all of them and optimize as much as possible. Be gentle and kind to yourself in the process, and know that this is likely going to require a commitment on your part. My inner child often throws a tantrum and I have to gently hold her hand and say "I know this sucks, you want to eat that & you can't, you want to go out for long runs, etc., but you are doing this for a reason," and she pouts for a bit and gets on board.
Best of luck to you :)
Others who write on this board more frequently and who can explain better than I will likely come in and tell you that diet is highly individual - it's sort of hard to know what to tell people (other than gluten seems to be a problem for most people, and most people have multiple sensitivities), except that the safest thing to do is to find a few "safe" foods and conduct a very strict elimination diet. This requires eating a very limited number of foods for some people, and when your symptoms abate, you add one back in at a time to see what happens. You also need to allow a few days in between introducing foods, because sometimes the reaction is not immediate. For me personally, most of my food sensitivities seem to be latent - in the moment, I am not running to the bathroom, but 24-48 hours later, symptoms appear.
Because I teach best what I most need to learn, I highly recommend that you be really strict about re-introducing foods if/when your symptoms abate on an elimination diet (i.e. ONLY one at a time, a pure food whole food that is a single ingredient rather than a processed food form, so you know exactly what it is you are reacting to).
Here is the link to the helpful instructions for how to generally do an elimination diet if you are unsure: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
As far as MC going away, I definitely think they need to update that information. I remember my GI telling me that when I was first diagnosed, and as a teen, I took it as: this affliction is like a cut - you don't have to take any personal responsibility for lifestyle changes, and it will just repair itself. So far, it appears that this is not true in the slightest.
I have read that some people have achieved remission on this board through dedication to a diet that works for them (does not provoke inflammation) in conjunction with medication at some points and managing stress levels.
I have had MC for 10 years and have only had very brief periods of remission (days to a week), and I believe this is mainly due to: 1) not managing stress level, 2) not managing stress levels, 3) not managing stress levels, 4) not adhering to an anti-inflammatory diet for long enough, and 5) not having a clinical response to standard medications due to the first 4 things. I also spent a good 6 years or so pretending that it would just go away on it's own...ha.
My best advice is this: sleep, relationships, work, exercise, trauma, food, other illness - these all impact our body and our resilience. If you want to really nail this and get your life back the fastest, pay attention to all of them and optimize as much as possible. Be gentle and kind to yourself in the process, and know that this is likely going to require a commitment on your part. My inner child often throws a tantrum and I have to gently hold her hand and say "I know this sucks, you want to eat that & you can't, you want to go out for long runs, etc., but you are doing this for a reason," and she pouts for a bit and gets on board.
Best of luck to you :)
Jane
Thx for the great advice.
the lifestyle tips u gave me are already in action for 2 years bcoz of my bladder disease.
Its frustrating that my lifestyle was so good and clean.. even then MC or UC hit me.
after campylobacter.. it hit me hard. I already did sports, relaxing, no stress.. sleep and alkaline diet that works for me.
I dont feel i cant do more. thats my problem.
Yes, my bladder condition is called IC (interstitial cystitis).
I did 2 years of internet research for 4 - 6 hours a day.
I really know everything about this IC disease.
more then every doctor on earth!
I have a mild case and inflammation is microscopic.
but drinking alcohol would give me extreme burning pain!
so this mild case isnt mild in symptoms for me.
Other can have ulcers. (like crohn vs MC).
kegels practice is more like pelvic muscle tightness/pain. Its diffrent then IC.
pelvic tension is more like the muscles push on the bladder output.. so u get frequency and disconfort.
U can test IC very easy:
bacteria is negative (offcourse)
drink alcohol (2 liters beer as example).. do this everyday..
If pain and or irritation comes in the bladder: Ur diagnose is 100% IC.
Its that easy. I dont get it why doctors cant make a diagnose faster.
polyps and cancer dont even hurt if u compare it to IC.
IC is a lot of pain and disability!
Alkaline diet and water can bring relief and control this disease.
my relief was diet, water, sports, rest, positive mind set, and as last: no stress.
I think its the same for every immune inflammation disease.
the lifestyle tips u gave me are already in action for 2 years bcoz of my bladder disease.
Its frustrating that my lifestyle was so good and clean.. even then MC or UC hit me.
after campylobacter.. it hit me hard. I already did sports, relaxing, no stress.. sleep and alkaline diet that works for me.
I dont feel i cant do more. thats my problem.
Yes, my bladder condition is called IC (interstitial cystitis).
I did 2 years of internet research for 4 - 6 hours a day.
I really know everything about this IC disease.
more then every doctor on earth!
I have a mild case and inflammation is microscopic.
but drinking alcohol would give me extreme burning pain!
so this mild case isnt mild in symptoms for me.
Other can have ulcers. (like crohn vs MC).
kegels practice is more like pelvic muscle tightness/pain. Its diffrent then IC.
pelvic tension is more like the muscles push on the bladder output.. so u get frequency and disconfort.
U can test IC very easy:
bacteria is negative (offcourse)
drink alcohol (2 liters beer as example).. do this everyday..
If pain and or irritation comes in the bladder: Ur diagnose is 100% IC.
Its that easy. I dont get it why doctors cant make a diagnose faster.
polyps and cancer dont even hurt if u compare it to IC.
IC is a lot of pain and disability!
Alkaline diet and water can bring relief and control this disease.
my relief was diet, water, sports, rest, positive mind set, and as last: no stress.
I think its the same for every immune inflammation disease.
Ken,
The inflammation that causes interstitial cystitis is exactly the same type of inflammation that develops in the intestines to cause lymphocytic colitis — namely, lymphocytic infiltration into the mucosal lining of the bladder. I had those same IC symptoms whenever my MC was active, but after I learned how to control my MC, the IC was no longer a problem. We have discussed this before, and many of us here have had this bladder problem, because it is very likely associated with MC.
Tex
The inflammation that causes interstitial cystitis is exactly the same type of inflammation that develops in the intestines to cause lymphocytic colitis — namely, lymphocytic infiltration into the mucosal lining of the bladder. I had those same IC symptoms whenever my MC was active, but after I learned how to control my MC, the IC was no longer a problem. We have discussed this before, and many of us here have had this bladder problem, because it is very likely associated with MC.
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.
I have been trying to stop budesonide since I went back on it in 2011. I cannot without bad results. I'm hoping to one day be pleasantly surprised that my time is extended but for now I take 3mg about every 5-7 days. It doesn't seem to be enough to make an impact but I would argue it does. The nurse always shakes her head because that dose is not an option on her computer questionnaire. My GI goes with it so I am happy to continue status quo.
I know there must be something more to my diet that I must address but have been side tracked with other health issues and it's too much to deal with right now so I live with it. Thankfully it still works for me, otherwise I would have night-time issues and horrible stomache rumblings. It has its own side effects but what drug doesn't?
I know there must be something more to my diet that I must address but have been side tracked with other health issues and it's too much to deal with right now so I live with it. Thankfully it still works for me, otherwise I would have night-time issues and horrible stomache rumblings. It has its own side effects but what drug doesn't?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
To deb- I also tried.to taper off entocort after 9 mon. Per my GI dr i nstructions. Bam- diarrhea returned horribly. Am trying 1 pill a day to regain control. Dr. Will not be happy. Am gf df sf egg and corn free. Don't eat any gf bread or mixes- too many other ingredients. Cheat with.choc. chips on occasion. Am really tired. Vit D level good. Never did stool tests because was gf free for 3 months before I found this site. Sandy
.
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Trying to heal.