Hello I have MC also
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Hello I have MC also
I was diagnosed with MC about a year and a half ago. But my first DR. basically ignored it. So, now I am on a 2nd Dr. My second Dr. said I have non specific MC. I don't know what that means. After i was diagnosed, the 1st Dr. gave me antibiotics which made me return to normal for 2 months. After the 2 months, I started getting D about once a week(and a couple of other symptoms). So he put me on another Antibiotic, which didn't help. then he wanted me to get an MRI of my small intestine, which I couldn't do. So I went to a second Dr. He put me on entocort for a month, but it didnt help at all . So, now he put me on another antibiotic, and if that doesn't work, (which from what I have been reading, it won't)he is going to put me on another anti inflammatory. Luckily my symptoms aren't that bad, as I have read. So, I will make some diet changes, to see if that helps until I can get tested for any food allergies.
Hi Lando. It's amazing what doctors don't know. If Entocort didn't work for you, then the Pepto Bismul protocol might. It has helped many here.
Diet is key to healing and remission. You can keep taking meds and they might help for a while, but you will relapse if you don't figure out what foods are causing the inflammation.I don't know how much you have been reading on this forum, but there is a ton of info. I just posted to another "newbie" about diet. Check it out. Gluten should probably go , but you may not see a difference right away. It stays in your body a long time. Dairy was horrible for me also.
If you can afford it, doing the tests at Enterolab will save a lot of time trying to figure out what you should or shouldn't eat. Check out their website. Stay away from fiber and raw fruits and veggies for now, They are too hard on your system.
Read, ask questions, and I do hope you find answers and feel better soon
Leah
Diet is key to healing and remission. You can keep taking meds and they might help for a while, but you will relapse if you don't figure out what foods are causing the inflammation.I don't know how much you have been reading on this forum, but there is a ton of info. I just posted to another "newbie" about diet. Check it out. Gluten should probably go , but you may not see a difference right away. It stays in your body a long time. Dairy was horrible for me also.
If you can afford it, doing the tests at Enterolab will save a lot of time trying to figure out what you should or shouldn't eat. Check out their website. Stay away from fiber and raw fruits and veggies for now, They are too hard on your system.
Read, ask questions, and I do hope you find answers and feel better soon
Leah
Hi Lando,
Welcome to the board. Using antibiotics to treat MC sometimes helps, but it's a very risky treatment method, because it can cause a C. diff infection that would be much worse than the situation you are in now. The fact that your first doctor ignored the disease makes it pretty clear that he or she knows very little about the disease. I agree with Leah, and her recommendations.
Again, welcome aboard, and please feel to ask anything.
Tex
Welcome to the board. Using antibiotics to treat MC sometimes helps, but it's a very risky treatment method, because it can cause a C. diff infection that would be much worse than the situation you are in now. The fact that your first doctor ignored the disease makes it pretty clear that he or she knows very little about the disease. I agree with Leah, and her recommendations.
That's just a medical term used to describe the situation when a patient has the markers of both CC and LC. IOW, you have lymphocytic infiltration in the epithelium (the surface layer) of the lining your colon (this marker is specific for a diagnosis of LC), and you also have thickened collagen bands in the lamina propria (which is a layer below the epithelium), and this marker is specific for CC. It doesn't matter, because the treatment is the same, regardless of which markers of the disease you happen to have. I refer to non-specific MC as simply MC, because that's the convention used by most medical professionals who are familiar with the disease.Lando wrote:My second Dr. said I have non specific MC. I don't know what that means.
Again, welcome aboard, and please feel 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.
Thanks for the welcomes, So should I stop taking the antibiotics? The next thing he wants me to try is Lialda. I have been reading the board, and will get the tests done pretty soon. I don't eat a lot of gluten, in my regular diet, but I do eat dairy, lactose free because I am lactose intolerant. It is going to be real hard for me to give up dairy though. But I will probably have to do it.
Lando,
We can't give medical advice — we can only relate our own experiences, and tell you what we would do if we were in a similar situation. You have to make your own decisions about your treatment.
Which antibiotics are you taking? Some are much more likely to cause problems than others.
For example, the fluoroquinolones are broad-spectrum antibiotics (including Ciprofloxacin, which is the one most commonly prescribed) that tend to bring remission from MC symptoms for most of us. The problem with this group of antibiotics though, is that they carry an unacceptably-high risk of causing tendinitis, or torn ligaments if used often.
Rifaxamin is an antibiotic that is specific to the intestines because it's poorly absorbed into the bloodstream. That helps to minimize the risk of systemic side effects. It's rather expensive, but it's commonly prescribed to treat traveler's diarrhea, and many GI docs prescribe it to treat MC. But even when it helps, the relief is only temporary, and the symptoms virtually always return after the treatment regimen is ended. Taking any antibiotic on a long-term basis invites a risk of creating an environment that is favorable to the development of antibiotic-resistant bacteria.
Lialda works for a few people who have MC, so it may be worth a try.
There are excellent milk substitutes available in most of the larger grocery stores. Most of us find that Almond Milk tastes good and works just as well as cow's milk for most purposes. Coconut milk is another good substitute. Even hemp milk is available. The one thing for which no safe dairy substitutes are available, is cheese. All safe cheese substitutes suck, as far as we have found.
Tex
We can't give medical advice — we can only relate our own experiences, and tell you what we would do if we were in a similar situation. You have to make your own decisions about your treatment.
Which antibiotics are you taking? Some are much more likely to cause problems than others.
For example, the fluoroquinolones are broad-spectrum antibiotics (including Ciprofloxacin, which is the one most commonly prescribed) that tend to bring remission from MC symptoms for most of us. The problem with this group of antibiotics though, is that they carry an unacceptably-high risk of causing tendinitis, or torn ligaments if used often.
Rifaxamin is an antibiotic that is specific to the intestines because it's poorly absorbed into the bloodstream. That helps to minimize the risk of systemic side effects. It's rather expensive, but it's commonly prescribed to treat traveler's diarrhea, and many GI docs prescribe it to treat MC. But even when it helps, the relief is only temporary, and the symptoms virtually always return after the treatment regimen is ended. Taking any antibiotic on a long-term basis invites a risk of creating an environment that is favorable to the development of antibiotic-resistant bacteria.
Lialda works for a few people who have MC, so it may be worth a try.
There are excellent milk substitutes available in most of the larger grocery stores. Most of us find that Almond Milk tastes good and works just as well as cow's milk for most purposes. Coconut milk is another good substitute. Even hemp milk is available. The one thing for which no safe dairy substitutes are available, is cheese. All safe cheese substitutes suck, as far as we have found.
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.
Rifaxamin is what I was prescribed, last year. That helped me for 2 months. The Dr. then gave it to me again when my symptoms returned, and it didn't help. The new Doc has me on Ciprofloxacin. Basically my new Dr, told me that Drs. don't know much about MC. He says this is trial and error, to see which one helps me. At least he isn't ignoring the problem, like my last Dr.tex wrote:Lando,
We can't give medical advice — we can only relate our own experiences, and tell you what we would do if we were in a similar situation. You have to make your own decisions about your treatment.
Which antibiotics are you taking? Some are much more likely to cause problems than others.
For example, the fluoroquinolones are broad-spectrum antibiotics (including Ciprofloxacin, which is the one most commonly prescribed) that tend to bring remission from MC symptoms for most of us. The problem with this group of antibiotics though, is that they carry an unacceptably-high risk of causing tendinitis, or torn ligaments if used often.
Rifaxamin is an antibiotic that is specific to the intestines because it's poorly absorbed into the bloodstream. That helps to minimize the risk of systemic side effects. It's rather expensive, but it's commonly prescribed to treat traveler's diarrhea, and many GI docs prescribe it to treat MC. But even when it helps, the relief is only temporary, and the symptoms virtually always return after the treatment regimen is ended. Taking any antibiotic on a long-term basis invites a risk of creating an environment that is favorable to the development of antibiotic-resistant bacteria.
Lialda works for a few people who have MC, so it may be worth a try.
There are excellent milk substitutes available in most of the larger grocery stores. Most of us find that Almond Milk tastes good and works just as well as cow's milk for most purposes. Coconut milk is another good substitute. Even hemp milk is available. The one thing for which no safe dairy substitutes are available, is cheese. All safe cheese substitutes suck, as far as we have found.
Tex
I have a few more questions, but I want to wait until i get my lab results back. So I know what I am dealing with.
Thanks for your help. And i will keep reading.
At least your new doctor is obviously honest, and he's quite correct about most doctors knowing very little about the disease, and in my book, his candor is worth a lot. He's apparently trying to learn as he goes, which is probably the best we can hope for, with this disease. So many GI specialists try to wing it by pretending they know what they're doing when they don't, and that's very unfair to the patient.Lando wrote:Basically my new Dr, told me that Drs. don't know much about MC. He says this is trial and error, to see which one helps me. At least he isn't ignoring the problem, like my last Dr.
The problem is that a few days to a week or so after you finish the Cipro treatment, the symptoms will return, and that will happen after every drug treatment that can be prescribed to treat this disease. Hopefully, some day he will discover that eliminating food sensitivities from the diet is the key to successfully treating the disease, but so far, very few GI docs have learned that little trick.
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 Lando. Please know that there is no such thing as eating a little gluten ... when it comes to building antibodies in your system. If you decide to do the diet thing ( which is needed usually for remission), then it must be all or nothing when it comes to gluten and dairy ( and maybe soy and eggs).
Good luck
Leah
Good luck
Leah
Yes, I understand. I am just talking about my daily diet before I make changes.Leah wrote:Hi Lando. Please know that there is no such thing as eating a little gluten ... when it comes to building antibodies in your system. If you decide to do the diet thing ( which is needed usually for remission), then it must be all or nothing when it comes to gluten and dairy ( and maybe soy and eggs).
Good luck
Leah
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mzh
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Hi Lando, welcome.
If I were you and as Leah said, I'd do the Enterolab test(s) to see what foods you react to. It will save you a lot of experimenting and guesswork. There are a variety of tests but most of us start with panel A, which tests for dairy, gluten, soy and eggs, and the gene test if we have children. But cutting out gluten, for example, before the testing won't give you an accurate result. It's best to have been eating it for a long time before the testing is done.
If I were you and as Leah said, I'd do the Enterolab test(s) to see what foods you react to. It will save you a lot of experimenting and guesswork. There are a variety of tests but most of us start with panel A, which tests for dairy, gluten, soy and eggs, and the gene test if we have children. But cutting out gluten, for example, before the testing won't give you an accurate result. It's best to have been eating it for a long time before the testing is done.
Also have sleep apnea
Thanks, Yes, that is what I am doing. I just went to my PCP, this morning to see if I have had the IGA test done and I haven't. So I got blood drawn today for it. Also since my symptoms aren't as severe as most on here, I can wait until I get the test done. Of course my PCP didnt really think the test would make a difference. he doesn't believe in food sensitivities causing MC.mzh wrote:Hi Lando, welcome.
If I were you and as Leah said, I'd do the Enterolab test(s) to see what foods you react to. It will save you a lot of experimenting and guesswork. There are a variety of tests but most of us start with panel A, which tests for dairy, gluten, soy and eggs, and the gene test if we have children. But cutting out gluten, for example, before the testing won't give you an accurate result. It's best to have been eating it for a long time before the testing is done.
Also I tried some So delicious chocolate Ice cream. My stomach didn't like it, even though it is DF, SF, and GF.