Thank you Tex for getting me signed up. I have been reading about all of your experiences
With MC. I was finally diagnosed in Feb. after 10 months of acute D, I was afraid to leave my house and at times found it hard to make it to the bathroom in time from my living room! I tried budesonide 9 mg daily and pepto bismol 2 tablets with each meal. The budesonide didn't work after three weeks and was very expensive so I asked to be changed to prednisone. I am seeing no watery D, I can tell when I need to head to the bathroom and have 1-2 BMs a day skipping a day once in a while. I am eating a low fiber low residue, as little artificial sweeteners as possible diet and seem to be doing well on it. Knowing full well that I am still on the prednisone and will have to stop it when I have been tapered down. I am researching gluten and dairy free eating plans, knowing full well I will need a life-style change to get my health back. Thank you all for sharing what works for you.
Empty Belly
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gadget Girl,
Welcome to our Internet family. Usually, budesonide works just as effectively for most of us as prednisone, but sometimes it will only work after 1 or 2 of the worst food sensitivities have been removed from our diet. It sounds as though you have a good plan in mind and it should work. Please don't wait too long to remove certain foods from your diet though, because otherwise as your dosage of prednisone gets down to the lower levels, your symptoms will begin to return. IOW, it takes time for the intestines to heal, and if they haven't at least begun to heal by the time the prednisone dose reaches a certain level, a relapse will usually occur. That's why we prefer budesonide over prednisone, because we can safely use it much longer, if necessary. It's the diet changes that actually heal the gut, not the corticosteroids.
The toughest part is deciding to take the plunge, but it gets easier as it begins to become second nature for us, and once our gut begins to heal and we begin to feel much better, that motivates us to stay focused. Healing takes time, and changing lifestyles is never easy, but in the long run we not only get our life back, but we end up with a much healthier diet that will surely help us to live longer and remain healthier longer.
When we stop and think about it, removing the inflammatory foods from our diet surely has to be the single most beneficial thing that we could ever do for our own long-term health and well-being, because for us, those foods are toxic. They inflame our digestive system everytime we eat them. That old saying, that we are what we eat, definitely applies to microscopic colitis patients. If only all of our GI specialists would discover that.
You're very welcome. And again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Usually, budesonide works just as effectively for most of us as prednisone, but sometimes it will only work after 1 or 2 of the worst food sensitivities have been removed from our diet. It sounds as though you have a good plan in mind and it should work. Please don't wait too long to remove certain foods from your diet though, because otherwise as your dosage of prednisone gets down to the lower levels, your symptoms will begin to return. IOW, it takes time for the intestines to heal, and if they haven't at least begun to heal by the time the prednisone dose reaches a certain level, a relapse will usually occur. That's why we prefer budesonide over prednisone, because we can safely use it much longer, if necessary. It's the diet changes that actually heal the gut, not the corticosteroids.
The toughest part is deciding to take the plunge, but it gets easier as it begins to become second nature for us, and once our gut begins to heal and we begin to feel much better, that motivates us to stay focused. Healing takes time, and changing lifestyles is never easy, but in the long run we not only get our life back, but we end up with a much healthier diet that will surely help us to live longer and remain healthier longer.
When we stop and think about it, removing the inflammatory foods from our diet surely has to be the single most beneficial thing that we could ever do for our own long-term health and well-being, because for us, those foods are toxic. They inflame our digestive system everytime we eat them. That old saying, that we are what we eat, definitely applies to microscopic colitis patients. If only all of our GI specialists would discover that.
You're very welcome. And 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.
How long should one be on Budesonide after they know which foods to omit? I know I have read it somewhere on this forum, but I want to take notes so I can be prepared for a serious discussion with my Dr. when I get food results back. (which wont be until May, as I still need to send in the food stool kit after I see my Dr. for the previous kit results that come in next week for the enzyme, bacteria, Folate, Vit D, Cholesterol stuff I went thru almost three weeks ago).
Time is my worst enemy right now....thanks for letting me butt into this conversation...I can so relate to the empty belly right now also.
Thanks
Erica
Time is my worst enemy right now....thanks for letting me butt into this conversation...I can so relate to the empty belly right now also.
Thanks
Erica
Hi Erica,
We're all different, so we all have different requirements. Remember that the corticosteroids do not actually heal the gut. Instead, research shows that they actually slow down healing. The diet changes are what heal the gut, by eliminating the source of the inflammation that continues to perpetuate the MC.
The reason why so many of us use budesonide while we are recovering is because it takes a relatively long time for the gut to heal, and the budesonide can help to mask the symptoms of MC to make life much more pleasant while we are waiting for the gut to heal from the diet changes. But many of us here have never taken budesonide or any other anti-inflammatory for the purpose of controlling our MC symptoms. We simply used the diet changes, and we just put up with the symptoms until our gut had healed enough to bring remission.
In most cases, when the question is, "how long does it take", the most important consideration is the point at which the diet is changed, because that's the time that determines when the healing can actually begin. Prior to that, using budesonide for years may suppress the symptoms, but we will relapse virtually every time we stop using it (without healing brought about by long-term diet changes).
So after we change our diet, then we can start the clock. Most of us can probably do OK on 2 or 3 months of budesonide at a full rate, followed by at least 3 or 4 months (or preferably longer) utilizing a schedule of slowly tapering the dosage until we are down to a single capsule every 3 or 4 days. In some of the tough cases though, longer use may be justified, or it may be helpful to continue to taper down to 1 capsule every 5 or 6 days before stopping. At such low rates, the risk of corticosteroid side effects such as osteoporosis is so low as to be negligible, so the slower the taper, the better the regimen usually works.
Some members successfully base their decision to step down their dosage by using constipation as a marker. IOW, as soon as they notice any constipation symptoms, they know that it's time to lower the dose, because when budesonide causes C, we obviously don't need as much as we're taking in order to maintain control.
I hope that some of this is helpful.
Tex
We're all different, so we all have different requirements. Remember that the corticosteroids do not actually heal the gut. Instead, research shows that they actually slow down healing. The diet changes are what heal the gut, by eliminating the source of the inflammation that continues to perpetuate the MC.
The reason why so many of us use budesonide while we are recovering is because it takes a relatively long time for the gut to heal, and the budesonide can help to mask the symptoms of MC to make life much more pleasant while we are waiting for the gut to heal from the diet changes. But many of us here have never taken budesonide or any other anti-inflammatory for the purpose of controlling our MC symptoms. We simply used the diet changes, and we just put up with the symptoms until our gut had healed enough to bring remission.
In most cases, when the question is, "how long does it take", the most important consideration is the point at which the diet is changed, because that's the time that determines when the healing can actually begin. Prior to that, using budesonide for years may suppress the symptoms, but we will relapse virtually every time we stop using it (without healing brought about by long-term diet changes).
So after we change our diet, then we can start the clock. Most of us can probably do OK on 2 or 3 months of budesonide at a full rate, followed by at least 3 or 4 months (or preferably longer) utilizing a schedule of slowly tapering the dosage until we are down to a single capsule every 3 or 4 days. In some of the tough cases though, longer use may be justified, or it may be helpful to continue to taper down to 1 capsule every 5 or 6 days before stopping. At such low rates, the risk of corticosteroid side effects such as osteoporosis is so low as to be negligible, so the slower the taper, the better the regimen usually works.
Some members successfully base their decision to step down their dosage by using constipation as a marker. IOW, as soon as they notice any constipation symptoms, they know that it's time to lower the dose, because when budesonide causes C, we obviously don't need as much as we're taking in order to maintain control.
I hope that some of this is helpful.
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 so much Tex,
I haven't been on any meds since my dx in 2012, when none of it worked persay to 'fix' my LC I didn't take anything except Allegra since then.
So with that said, Budesonide worked when I was taking it 8 weeks April-May 2012, in fact it worked the best but I did not know my food sensitivities, so of course all BM symptoms have been with me ever since.
This is the part that I want to try when I get my test results about food and begin my new food world. I want to take this med while I eliminate my food sensitivities, then I can feel more assured that as I am tapering off the Budesonide I can watch for any other food sensitivities along with less BM movements and more solid ones taboot! I haven't experienced a solid BM since July of 2007, as my life changed in August of 2007 and it hasn't been the same since.
With too many responsibilities in my household I'm to frazzled to eat the same thing for 3-4 days at a time let alone be the grocery shopper for myself, plus my husband who (is doing much better) but is on the cusp of diabetes and is losing weight at this time, plus my 22 yr old daughter and her 2 yr old who has been living with us has created a monster for my mind to wrap around what food is in the kitchen right now. Everyone seems to be eating differently and I am lost at times what I did last to help myself.
So now that I have pretty much sounded like I don't have a life....I do actually, I work full time (enjoy my job) but with MC my brain seems to go on vacation at the worse times, and menopause isn't helping!
So I need to do this food test, it can't come soon enough. If you think I am on the right track with my earlier thoughts above then that is what I will be striving for in the months to come. Plus checking back here from time to time, just because I am really enjoying the camaraderie.
I haven't been on any meds since my dx in 2012, when none of it worked persay to 'fix' my LC I didn't take anything except Allegra since then.
So with that said, Budesonide worked when I was taking it 8 weeks April-May 2012, in fact it worked the best but I did not know my food sensitivities, so of course all BM symptoms have been with me ever since.
This is the part that I want to try when I get my test results about food and begin my new food world. I want to take this med while I eliminate my food sensitivities, then I can feel more assured that as I am tapering off the Budesonide I can watch for any other food sensitivities along with less BM movements and more solid ones taboot! I haven't experienced a solid BM since July of 2007, as my life changed in August of 2007 and it hasn't been the same since.
With too many responsibilities in my household I'm to frazzled to eat the same thing for 3-4 days at a time let alone be the grocery shopper for myself, plus my husband who (is doing much better) but is on the cusp of diabetes and is losing weight at this time, plus my 22 yr old daughter and her 2 yr old who has been living with us has created a monster for my mind to wrap around what food is in the kitchen right now. Everyone seems to be eating differently and I am lost at times what I did last to help myself.
So now that I have pretty much sounded like I don't have a life....I do actually, I work full time (enjoy my job) but with MC my brain seems to go on vacation at the worse times, and menopause isn't helping!
So I need to do this food test, it can't come soon enough. If you think I am on the right track with my earlier thoughts above then that is what I will be striving for in the months to come. Plus checking back here from time to time, just because I am really enjoying the camaraderie.
Yes, you're definitely on the right track. After all these years with compromised digestion, recovery will take some time and some hard work and dedication, but it is certainly doable, and it's absolutely worth all the effort. You seem motivated, and motivated people get the job done.
We're always here anytime a question arises (it's much better to ask than to suffer in silence), and if at some point you need some additional encouragement, please read some of the success stories ( Member Success Stories ) written by members some of whom were originally in the same basic situation as you, who reacted for years before finding this board and deciding to take the plunge. There are even a few stories from members who found us years earlier, but who weren't convinced that diet changes were the solution, until the tried all the other options without success.
I realize this may not be a popular topic with your husband and daughter, but because gluten is so ubiquitous, and cross-contamination so easy (especially if there is any wheat flour in the house) if they would also agree to eat gluten free, not only would it be much healthier for them (diabetes is strongly associated with gluten sensitivity, and your daughter has your genes), but it would make your job of avoiding gluten yourself much, much easier. I'm talking from experience because a few years ago I discovered that my diet was being cross-contaminated by wheat flour in the house. I tracked it down by sending a stool sample to EnteroLab after my symptoms began creeping back into my life. Anytime someone opens a bag of flour, tiny invisible particles take off and land everywhere, including on your food and the surfaces that you will use for preparing your food, inside cabinets and drawers, and everywhere else.
You're very welcome. And since you're part of the family here now, and we like to keep up with what's happening in the family, please keep us posted on your progress whenever you can, and best of luck with your recovery.
Tex
We're always here anytime a question arises (it's much better to ask than to suffer in silence), and if at some point you need some additional encouragement, please read some of the success stories ( Member Success Stories ) written by members some of whom were originally in the same basic situation as you, who reacted for years before finding this board and deciding to take the plunge. There are even a few stories from members who found us years earlier, but who weren't convinced that diet changes were the solution, until the tried all the other options without success.
I realize this may not be a popular topic with your husband and daughter, but because gluten is so ubiquitous, and cross-contamination so easy (especially if there is any wheat flour in the house) if they would also agree to eat gluten free, not only would it be much healthier for them (diabetes is strongly associated with gluten sensitivity, and your daughter has your genes), but it would make your job of avoiding gluten yourself much, much easier. I'm talking from experience because a few years ago I discovered that my diet was being cross-contaminated by wheat flour in the house. I tracked it down by sending a stool sample to EnteroLab after my symptoms began creeping back into my life. Anytime someone opens a bag of flour, tiny invisible particles take off and land everywhere, including on your food and the surfaces that you will use for preparing your food, inside cabinets and drawers, and everywhere else.
You're very welcome. And since you're part of the family here now, and we like to keep up with what's happening in the family, please keep us posted on your progress whenever you can, and best of luck with your recovery.
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 Tex,
Knowing there is more that can be done is what keeps me motivated to keep trying. I really think my family is willing to meet me half way at this time about gluten,(I've been trying to work at it for the last 3 weeks - doing good, can do better) they want to see me feel better (I'm kinda the glue that keeps everyone sane in our home, so if I'm not happy no one is
strange how that works, but it's been like that for the last 22 yrs I've been married). My husband isn't picky what so ever about what food he eats (blessing in disguise, maybe, maybe not) so long story shortened if it has some flavor he's happy. My daughter will eventually be on her own (I'm sure she doesn't want to live with us forever ) 
Murphy law = just about the time I get this all figured out something will change - guaranteed.
Off topic...how to do I change my profile picture....I can't seem to get pics on my computer to shrink to 6kb
It would be nice if people could see me when visiting.
Thanks
Erica
Knowing there is more that can be done is what keeps me motivated to keep trying. I really think my family is willing to meet me half way at this time about gluten,(I've been trying to work at it for the last 3 weeks - doing good, can do better) they want to see me feel better (I'm kinda the glue that keeps everyone sane in our home, so if I'm not happy no one is
strange how that works, but it's been like that for the last 22 yrs I've been married). My husband isn't picky what so ever about what food he eats (blessing in disguise, maybe, maybe not) so long story shortened if it has some flavor he's happy. My daughter will eventually be on her own (I'm sure she doesn't want to live with us forever ) Murphy law = just about the time I get this all figured out something will change - guaranteed.Off topic...how to do I change my profile picture....I can't seem to get pics on my computer to shrink to 6kb
It would be nice if people could see me when visiting.Thanks
Erica
A gluten-free home makes meal preparation much safer (and much easier), so you are fortunate if they are willing to do that. Eliminating gluten-containing flour in the air, and crumbs on countertops and tables eliminates accidents that are bound to happen occasionally when we are in a hurry and forget to wipe a surface before using it for meal preparation.
A lot of members have problems convincing the server to accept their uploaded avatar files. If you will attach any image file that you want converted into an avatar to an email and send it to me, I'll be happy to convert it and persuade the server to accept it. It doesn't have to be a small file, because the larger the file size, the easier it is to downsize it enough for an avatar while still retaining enough detail to maintain quality.
You can send me an email by clicking on the "email" button at the bottom of this post. (IOW clicking on that button will cause your browser to open a pre-addressed email-composing window.
You're very welcome,
Tex
Erica wrote:Off topic...how to do I change my profile picture....I can't seem to get pics on my computer to shrink to 6kb Confused It would be nice if people could see me when visiting.
A lot of members have problems convincing the server to accept their uploaded avatar files. If you will attach any image file that you want converted into an avatar to an email and send it to me, I'll be happy to convert it and persuade the server to accept it. It doesn't have to be a small file, because the larger the file size, the easier it is to downsize it enough for an avatar while still retaining enough detail to maintain quality.
You can send me an email by clicking on the "email" button at the bottom of this post. (IOW clicking on that button will cause your browser to open a pre-addressed email-composing window.
You're very welcome,
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 Tex,
Just emailed you a pic.
It dawned on me that no matter how sensitive I may have become to gluten my job may never let me be 100% symptom free as you see I am an Office manager for a Nationwide Food Service company and we provide the food to the campus for the students at a major liberal arts college in Walla Walla WA. I've been here 21 years, can't imagine ever having to leave with stability and great benefits....chefs cook from scratch onsite which means everything you can imagine.
I sure hope once I understand my food sensitivities I can just watch what I come in contact with around here. They do have a made without gluten station that I frequent for staples and desserts, and I'm careful eating what is prepared as I can ask the chefs how things were made. It has been a big family where I work.
Cheers
Erica
Just emailed you a pic.
It dawned on me that no matter how sensitive I may have become to gluten my job may never let me be 100% symptom free as you see I am an Office manager for a Nationwide Food Service company and we provide the food to the campus for the students at a major liberal arts college in Walla Walla WA. I've been here 21 years, can't imagine ever having to leave with stability and great benefits....chefs cook from scratch onsite which means everything you can imagine.
I sure hope once I understand my food sensitivities I can just watch what I come in contact with around here. They do have a made without gluten station that I frequent for staples and desserts, and I'm careful eating what is prepared as I can ask the chefs how things were made. It has been a big family where I work.
Cheers
Erica
Being an office manager shouldn't be nearly as risky as being a chef in the midst of all that, so you should be OK as long as you remember to stay alert and keep your guard up. At first it will take a lot of conscious effort, but eventually it will become second nature.
Individual sensitivity levels vary (even among celiacs), so if you happen to be one of the lucky ones you might not be quite as sensitive to tiny specks of flour floating around as many of us here, and that would be a huge advantage.
Tex
Individual sensitivity levels vary (even among celiacs), so if you happen to be one of the lucky ones you might not be quite as sensitive to tiny specks of flour floating around as many of us here, and that would be a huge advantage.
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.
Well I jsut went and saw a different Gastrointerologist and he was lovely he actually cared about my LC. He has tried me on Mezavant to see how it goes for a month has anyone else been on htis. If this does not work he is going to put me on the other steriod it starts with a B cant rememebr the name but many on this forum are on it. Anywayt he govt does not help with this so if I have to go on this it will cost me $200 per month ouch and he told me that there are very few side effects with this drug. Would be interested to hear from nayone that has tried Mezavant and did it work.
Cheers
Cheers
Karen Moran
Hi Karen,
That's an old anti-inflammatory medication that offers a reasonably good chance of success. It's usually not as effective as budesonide, but over the years quite a few members here have used it. I really don't know what the success rate has been among members here but hopefully some members who have actually used it will see your post and offer their insight.
Believe it or not, budesonide is cheap in Aus. Here in the US it's 20 to 30 times that price — absolutely unbelievable and totally ridiculous. It has become so expensive that with some of the new health care insurance plans and government (medicare) drug programs, it's either not listed or it's listed in a high category as a "special drug" (meaning that the patient is out of luck because the insurance won't be paying much of the cost).
Without good insurance here, most patients either have to do without or order it from India, where a month's supply (90 capsules) costs $45.92 in US dollars (plus shipping). But that beats the heck out of paying several thousand dollars for the domestic product that won't work any better than the Budez-CR sold in India.
Tex
That's an old anti-inflammatory medication that offers a reasonably good chance of success. It's usually not as effective as budesonide, but over the years quite a few members here have used it. I really don't know what the success rate has been among members here but hopefully some members who have actually used it will see your post and offer their insight.
Believe it or not, budesonide is cheap in Aus. Here in the US it's 20 to 30 times that price — absolutely unbelievable and totally ridiculous. It has become so expensive that with some of the new health care insurance plans and government (medicare) drug programs, it's either not listed or it's listed in a high category as a "special drug" (meaning that the patient is out of luck because the insurance won't be paying much of the cost).
Without good insurance here, most patients either have to do without or order it from India, where a month's supply (90 capsules) costs $45.92 in US dollars (plus shipping). But that beats the heck out of paying several thousand dollars for the domestic product that won't work any better than the Budez-CR sold in India.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Karen
Medication Cost is what motivated me to figure out my MC management plan via strict diet as soon as I could...
(and take a wholistic approach to wellness via acupuncture, supplements etc)
When I first researched it 5.25 years ago, Aus Customs were not allowing medications to come from India.
Medication Cost is what motivated me to figure out my MC management plan via strict diet as soon as I could...
(and take a wholistic approach to wellness via acupuncture, supplements etc)
When I first researched it 5.25 years ago, Aus Customs were not allowing medications to come from India.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama