Gabes honey!
MC, kidneys AND FMS are way too much together. Not fair play at all. I know where you are and I feel so much for you!
Thanks for reminding me that my trip was not so long ago (6 months) and that I had real food difficulties there. I don't think I have managed to get back to any fort of healing since. Not that I was "healed" before, but I WAS better than I am now.
So Newbies - a reminder to really look back and see what might have caused a flare, and what may be keeping you from getting on the road to healing.
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gabes.....AWESOME AWESOME AWESOME POST!!!! Sometimes I forget what life was like before MC because my new way of life has so much more meaning for me now. I am so thankful that I am alive and I am able to eat at all. So when people ask me how do I do it...I tell them...it's not hard when you have no other way to survive!!! I am so grateful to have you all there for me in the beginning of my journey of MC because I really don't think I would be where I am today without you all! I also had to look at the other aspects of my life which was much harder then the MC to deal with. Nobody wants to face what is really going on in their lives and make positive improvements. I did that and it was hard! But I am in such a better place in my life then I have ever been. So for me having MC was a blessing in disguise! It made me make changes in every aspect of my life and I am now the healthiest I have ever been. It's a shame that it took me till I was in my 50's to figure it out! But I guess better late then never! Gabes...I will send you a long distance healing with love and light! It's has to be hard dealing with kidney, FMS and the MC! So my heart and my prayers are with you!
With love,
Robin
With love,
Robin
Gabes - Thank you for this post! I am a newbie and this is my first time writing on this blog. I'm not certain exactly what I am doing, but here goes... You mentioned in a past post that there were five things that helped you conquer MC. One of them was zinc. I'm assuming another was vitamin D levels. What were the others? I know we are all different but I've been curious.
I am sorry to hear about your "other/new" problems.
Cathy
I am sorry to hear about your "other/new" problems.
Cathy
Cathy
Hi Cathy,
Welcome to our internet family. I believe that Gabes is currently in the process of moving, so it's probably unlikely that she will be able to respond to your post.
My memory is not good enough to recall exactly which 5 things she might have been referring to, but in general, Gabes has had good results with things such as acupuncture and relaxation techniques, pacing herself so as to keep her stress level down, and eating a bland, easy-to-digest diet based on gooey rice, whenever her digestive system acts up.
Again, welcome aboard, and I sincerely hope that the information that you find on this discussion board will allow you to get your life back.
Tex
Welcome to our internet family. I believe that Gabes is currently in the process of moving, so it's probably unlikely that she will be able to respond to your post.
My memory is not good enough to recall exactly which 5 things she might have been referring to, but in general, Gabes has had good results with things such as acupuncture and relaxation techniques, pacing herself so as to keep her stress level down, and eating a bland, easy-to-digest diet based on gooey rice, whenever her digestive system acts up.
Again, welcome aboard, and I sincerely hope that the information that you find on this discussion board will allow you to get your life back.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Cathy,
Welcome to the group, bit of a bugger that you had to find us.....
Tex, as always is amazing with his memory....
He is doing better than me!!!, I would have to read my other posts to remember the exact 5
Out of my head right now....
Zinc is very good in the healing stage
Vit d3 (good quality preferably sublingual) can help so much, not just mc
Low inflammation gut healing eating plan, even now, 3.5 years later, my eating plan is quite plain/bland, low amount of ingredients, well cooked, easy to digest.
I don't eat out very often,
Natural therapies /relaxation techniques / reading etc to help with change/transformation. Acceptance of what is, is important.....
Becoming a self manager, research, make informed decisions, the current health systems are not geared up to help manage people with things like mc.....
Most of all, be patient, don't rush, it will take time to figure out what works best for you.
Listen to your body...
My motto.... Progress not perfection....
Knowing what works, what your safe meals are is something you will use for the rest of your life, anytime other health issues arise, or major stress events in your life, reverting back to your safe meals will always help....
Good luck for your mc journey....
Welcome to the group, bit of a bugger that you had to find us.....
Tex, as always is amazing with his memory....
He is doing better than me!!!, I would have to read my other posts to remember the exact 5
Out of my head right now....
Zinc is very good in the healing stage
Vit d3 (good quality preferably sublingual) can help so much, not just mc
Low inflammation gut healing eating plan, even now, 3.5 years later, my eating plan is quite plain/bland, low amount of ingredients, well cooked, easy to digest.
I don't eat out very often,
Natural therapies /relaxation techniques / reading etc to help with change/transformation. Acceptance of what is, is important.....
Becoming a self manager, research, make informed decisions, the current health systems are not geared up to help manage people with things like mc.....
Most of all, be patient, don't rush, it will take time to figure out what works best for you.
Listen to your body...
My motto.... Progress not perfection....
Knowing what works, what your safe meals are is something you will use for the rest of your life, anytime other health issues arise, or major stress events in your life, reverting back to your safe meals will always help....
Good luck for your mc journey....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Leah,
Welcome to our internet family. I hope that you can find the solutions that you are seeking here.
Please feel free to ask anything.
Tex
Welcome to our internet family. I hope that you can find the solutions that you are seeking here.
Please feel free to ask anything.
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, my name is Sherry. I am a married 41 year old lady from just outside of New Orleans.
My doctor just told me on the 16th of this month that I have MC (after a colonoscopy) , but not what kind. I had the symptoms for 3 months before I went to the doctor but he did an EGD, saw nothing, did the other scope and found the MC. I feel fortunate that he diagnosed me so quickly. I do have a couple of questions, if anyone wouldn't mind sharing what they know?
1-Has anyone taken Uceris?
2-Would it be effective to take the Uceris for a little while to get some of the inflammation to go down, and then work with possible food triggers?
3-The only pain I have experienced(it does get intense) is basically along my transverse colon. But, like I said it's pretty much constant and gets intense sometimes. Is that how it is for anyone else?
4- :) Does anyone else feel like their "warranty" ran out at 40 years of age?? It's been nothing but trouble since!
Thanks guys, and nice to meet everyone-
Sherry
My doctor just told me on the 16th of this month that I have MC (after a colonoscopy) , but not what kind. I had the symptoms for 3 months before I went to the doctor but he did an EGD, saw nothing, did the other scope and found the MC. I feel fortunate that he diagnosed me so quickly. I do have a couple of questions, if anyone wouldn't mind sharing what they know?
1-Has anyone taken Uceris?
2-Would it be effective to take the Uceris for a little while to get some of the inflammation to go down, and then work with possible food triggers?
3-The only pain I have experienced(it does get intense) is basically along my transverse colon. But, like I said it's pretty much constant and gets intense sometimes. Is that how it is for anyone else?
4- :) Does anyone else feel like their "warranty" ran out at 40 years of age?? It's been nothing but trouble since!
Thanks guys, and nice to meet everyone-
Sherry
Hi Sherry,
Welcome to our internet family. A couple of members here have tried Uceris, but as far as I'm aware their results have not been very satisfactory. Uceris was developed specifically to treat UC, and UC typically doesn't cover as much of the GI tract as MC, so I'm not convinced that Uceris is a good choice for treating MC. Most members here have much better luck using Entocort.
Our experience has been that if you don't change your diet as soon as you start taking a corticosteroid, when you come to the end of your treatment period for the medication, your symptoms will relapse. It takes time for the gut to heal, and the corticosteroids do not actually heal the gut. Drugs can mask the symptoms as long as they are used, but only diet changes can heal the gut, because without avoiding the foods to which we are sensitive, the inflammation continues to be regenerated on a continual basis. IOW, your actual treatment to control your inflammation begins when you change your diet, not when you begin taking an anti-inflammatory drug (despite what your GI doc may have told you).
Pain location varies by the individual, and some people who have MC have no pain, but pain along the transverse colon is not uncommon.
My warranty seems to have lasted until I reached my mid to late 50s.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. A couple of members here have tried Uceris, but as far as I'm aware their results have not been very satisfactory. Uceris was developed specifically to treat UC, and UC typically doesn't cover as much of the GI tract as MC, so I'm not convinced that Uceris is a good choice for treating MC. Most members here have much better luck using Entocort.
Our experience has been that if you don't change your diet as soon as you start taking a corticosteroid, when you come to the end of your treatment period for the medication, your symptoms will relapse. It takes time for the gut to heal, and the corticosteroids do not actually heal the gut. Drugs can mask the symptoms as long as they are used, but only diet changes can heal the gut, because without avoiding the foods to which we are sensitive, the inflammation continues to be regenerated on a continual basis. IOW, your actual treatment to control your inflammation begins when you change your diet, not when you begin taking an anti-inflammatory drug (despite what your GI doc may have told you).
Pain location varies by the individual, and some people who have MC have no pain, but pain along the transverse colon is not uncommon.
My warranty seems to have lasted until I reached my mid to late 50s.
Again, welcome aboard, and please feel free to ask anything.
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 suffering with MC for about 3 years now. I have a good GI doctor, and a good pharmacy that I can purchase the Budesonide for about $49 for a months supply. It's Jan's Pharmacy in Canada for those of you who may or may not be able to cover this with insurance.
I have intermittent problems, which have presently presented. Along with the diarrhea, there is pain and weight loss, muscle cramping, and general fatigue. Depression ensues. I have a repugnance for taking the meds because of the steroids, which my doctor claims doesn't really get absorbed into the body; only the intestine.
Presently, my quest is to try and find someone that has been successful with controlling this disease with diet. Has anyone been able to do so? Mine seems to be sensitive to gluten and sugars. I can eat Stevia, but had a sensitivity test that revealed a slight sensitivity to most other artificial sweeteners.
Anything you all can suggest is welcomed. I have not gone back on my meds, but suppose I must in the next day or two, as my experience with the condition is that it only worsens over time
I have intermittent problems, which have presently presented. Along with the diarrhea, there is pain and weight loss, muscle cramping, and general fatigue. Depression ensues. I have a repugnance for taking the meds because of the steroids, which my doctor claims doesn't really get absorbed into the body; only the intestine.
Presently, my quest is to try and find someone that has been successful with controlling this disease with diet. Has anyone been able to do so? Mine seems to be sensitive to gluten and sugars. I can eat Stevia, but had a sensitivity test that revealed a slight sensitivity to most other artificial sweeteners.
Anything you all can suggest is welcomed. I have not gone back on my meds, but suppose I must in the next day or two, as my experience with the condition is that it only worsens over time
Be the Change You Wish to See In the World -- Ghandi
Hi,
Welcome to the board. Actually, virtually all of us use some type of diet changes in order to help control our symptoms. Some of us (including myself) control our symptoms by diet changes alone, and many others here use a combination of diet changes and medications in order to control their symptoms.
Basically (despite what your GI specialist may try to tell you) medications can mask the symptoms (for many of us, but not for all of us), but as soon as we discontinue the medications, the symptoms will return. That's because certain foods in our diet cause our immune system to generate antibodies that promote inflammation, and the inflammation pattern (together with certain typical clinical symptoms) is known by doctors as microscopic colitis. Certain drugs can also cause the same pattern of inflammation. This means that the only way to actually stop the inflammation from being regenerated is to change our diet to eliminate the foods that cause us to react, and/or avoid any drugs that trigger the disease. If we do that, and if we are extremely careful with our diet, then our gut will slowly heal.
Most of us are sensitive to gluten, all dairy products, and all soy products (including most legumes). Many of us are also sensitive to eggs. Some of us have many additional food issues. And yes, most of us can't handle any artificial sweeteners or moderate to large amounts of sugar while we are recovering.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Actually, virtually all of us use some type of diet changes in order to help control our symptoms. Some of us (including myself) control our symptoms by diet changes alone, and many others here use a combination of diet changes and medications in order to control their symptoms.
Basically (despite what your GI specialist may try to tell you) medications can mask the symptoms (for many of us, but not for all of us), but as soon as we discontinue the medications, the symptoms will return. That's because certain foods in our diet cause our immune system to generate antibodies that promote inflammation, and the inflammation pattern (together with certain typical clinical symptoms) is known by doctors as microscopic colitis. Certain drugs can also cause the same pattern of inflammation. This means that the only way to actually stop the inflammation from being regenerated is to change our diet to eliminate the foods that cause us to react, and/or avoid any drugs that trigger the disease. If we do that, and if we are extremely careful with our diet, then our gut will slowly heal.
Most of us are sensitive to gluten, all dairy products, and all soy products (including most legumes). Many of us are also sensitive to eggs. Some of us have many additional food issues. And yes, most of us can't handle any artificial sweeteners or moderate to large amounts of sugar while we are recovering.
Again, welcome aboard, and please feel free to ask anything.
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 tried for 5 years to control my MC (LC) by diet alone like Tex , Polly and others. ( My intolerances have grown and grown and I can't figure out all of them.) No luck, so I am on day 3 of generic Entocort. Today, I would say semi Norman!
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Thank you so much for the information. So, although I have had intolerance tests, I may be sensitive to things that didn't show up? I only have reactions to rasberries, and slightly to splenda. So the sensitivity test may not have been informative for me.
I haven't given up legumes, eat eggs regularly (they seem to soothe), stay away from mainly dairy, sugar and gluten. But I'm not hyper about it. I will eat natural chips (probably too much oil) especially when I am episoding because the salt seems to help. I will also drink cabernet sauvignon in moderation as it seems to help with the intestinal pain. I don't have gas; rather severe diarrhea when it is active.
It just makes no sense to me that I can go for several months virtually symptom-free (are we ever completely symptom free?) and then one morning it's back. There must be something I am doing really wrong with my diet. Okay... I do drink coffee too.
How long does it take what you eat to start reacting to your gut? I have been feeling like, if it doesn't hurt you for several days, then it didn't hurt you.
judy
I haven't given up legumes, eat eggs regularly (they seem to soothe), stay away from mainly dairy, sugar and gluten. But I'm not hyper about it. I will eat natural chips (probably too much oil) especially when I am episoding because the salt seems to help. I will also drink cabernet sauvignon in moderation as it seems to help with the intestinal pain. I don't have gas; rather severe diarrhea when it is active.
It just makes no sense to me that I can go for several months virtually symptom-free (are we ever completely symptom free?) and then one morning it's back. There must be something I am doing really wrong with my diet. Okay... I do drink coffee too.
How long does it take what you eat to start reacting to your gut? I have been feeling like, if it doesn't hurt you for several days, then it didn't hurt you.
judy
Be the Change You Wish to See In the World -- Ghandi
Judy,
The only food sensitivity tests that are truly reliable for detecting the type of food sensitivities that are associated with MC, are the stool tests offered by EnteroLab, in Dallas, TX. The skin tests are totally unreliable (they're for skin allergies), and the blood tests have only a fraction of the sensitivity and reliability of the stool tests. Most blood tests yield too many false positive and false negative results that have to be verified by careful trial and error dietary testing. The stool tests offered by EnteroLab are really the only practical option available for determining food sensitivities in a straightforward, reliable way.
In most cases, reactions to foods begin to develop roughly 4 to 12 hours after a problem food is eaten. However, if we are also allergic to a food, a reaction might begin within 10 to 15 minutes after eating it. In a few cases, it can take a day or 2 (or even 3) for a reaction to develop. But the most common time is roughly 6 hours (more or less) after the food in eaten.
Tex
The only food sensitivity tests that are truly reliable for detecting the type of food sensitivities that are associated with MC, are the stool tests offered by EnteroLab, in Dallas, TX. The skin tests are totally unreliable (they're for skin allergies), and the blood tests have only a fraction of the sensitivity and reliability of the stool tests. Most blood tests yield too many false positive and false negative results that have to be verified by careful trial and error dietary testing. The stool tests offered by EnteroLab are really the only practical option available for determining food sensitivities in a straightforward, reliable way.
In most cases, reactions to foods begin to develop roughly 4 to 12 hours after a problem food is eaten. However, if we are also allergic to a food, a reaction might begin within 10 to 15 minutes after eating it. In a few cases, it can take a day or 2 (or even 3) for a reaction to develop. But the most common time is roughly 6 hours (more or less) after the food in eaten.
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.