Recently Diagnosed with microscopic colitis (LC)
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Recently Diagnosed with microscopic colitis (LC)
Hello, I have always had troubles with some chronic D here and there but never to this extreme. After having my third baby and teaching kindergarten for the past 12 years I think the stress put me over the edge and I got extremely sick which put me on the hunt of what was wrong. After being sick for 1 1/2 months and 25lbs of weight loss I finally got my diagnosis of MC. Before they would treat it though I had to wait on Blood test results (10 more days) and upper GI scope biopsies to find out if I had Celiac Sprue (which came out negative). Then I was put on Asacol which made me sicker and then I was finally put on Endocort with which I have had some success but I still couldn't get my appetite back and was very nauseated. They put me on Remeron a antidepressant/anxiety med that helps increase appetite. This did help but after 6weeks on endocort and 4 weeks on Remeron I am still left with issues. I still wake up sick every morning (nauseated, cramping, 2 to 4 BMs. Not all D but soft stools to semi soft. I also have had vision changes throughout this mess. It is blurred and causes me not to feel great. I still have low energy and have a general ill feeling throughout my day. I also have been experiencing some anxiety issues since the onset of this. I am just surviving my days instead of living them. Does my story seem similar to anyone? I haven't done any food intolerance testing yet. I did try to go completely dairy free and gluten free for about 3 weeks when I first was put on Endocort but continued to be really nauseated and had no appetite. Then my GI doc put me on the Remeron and told me to eat whatever even icecream all day long if I wanted (No way I would do that is he crazy!). He just wanted food in me and some weight put back on me. He said that nausea and appetite loss wasn't a normal symptom of people with MC. I just want to know if this normal for people with MC?
Hi, I also was diagnosed with LC a few years ago. I have had a rather touchy bowel most of my life. Stress will set it off, and extreme stress can bring on a flare of the explosive watery D. In January I was under extreme stress and had a full blown attack of D many times a day. I do not tolerate certain foods and they are bread of any kind (yeast?) bananas, eggs, raw fruits/vegs. Chocolate gives me heartburn as does tomato sauce. Dairy does not bother me. When I gave up bread, the heartburn went away immediately. I had a colonoscopy recently and again was told LC. I took Asacol for several days with no positive effect, altho I had been told it takes a couple weeks to kick in. I just quit it anyways, desiring to try other approaches. I feel that after sessions of D over a period of time, your good bacteria has been washed out and needs to be replaced in the gut. I took some Imodium followed after a couple of hours, with a couple probiotic tablets. Figured they would stay in me longer that way and maybe do some good. It seemed to work and things went from watery, to soft, to normal in a period of a week or so. For a while back then, I was losing about 3/4 of a pound a day, and had given up most everything, and was very depressed and weak, pretty much giving up. Friends gave various advice, but if I took it all, I would have been eating nothing or next to nothing. My stressful situation ended, the probiotics and Imodium helped me regain control of my gut, and I am now normal; I hope it lasts. I did look up Remeron and it mentioned sleeplessness, anxiety, and nausea, as side effects. I did have mild nausea and sleeplessness. Of course, I was anxious/depressed; who wouldn't be? Some of the mood elevating drugs like seratonin uptake inhibitors are implicated in causing/making worse microscopic colitis. Don't know if Remeron is one of them. There seems to be a school of thought among gastroenterologists that if you take Pepto Bismol or Imodium, you can eat anything. I have gotten this from a couple of them. I draw the line at gluten, however, as I believe MC of its various sorts is akin to Celiac in some way, and I know my body rebels when I eat bread. I know that feeling depressed/anxious makes me not want to eat. People told me to eat rice, but when things were at their worst, rice didn't help me. I tried to eat some chicken, baked potato, little bit of vegetables well cooked, jello and later pudding, hotdish made with GF noodles....careful of canned soups because of wheat flour...read labels carefully. Take heart, many on this board have gone thru the dark days you are now experiencing. They are a great source of support...good luck, Sylvia
Do good or do not
Hi GLJ,
Welcome to our internet family. I'm sorry to hear of your continuing problems, but hopefully you can find some solutions here.
To get right down to answering your questions, while it is true that not everyone with MC experiences nausea and appetite loss, many of us here have had those issues, including myself, so I would rate it as somewhat common. It appears that your doctor is not very familiar with the real world of MC - he's only aware of what he learned about it in med school, (which was precious little, since the medical community still considers MC to be a rare disease), and what he has read in medical journals, (most of which is either out-of-date, or just plain incorrect).
Yes, many members here have reacted adversely to Asacol, (probably, in most cases, because it contains lactose, and most of us are dairy-intolerant). Also, a few members here have found that Entocort causes nausea for them, (sometimes along with other neurological symptoms, such as vertigo). In addition to the nausea, the fact that you are experiencing vision issues, including blurred vision, pretty well verifies that you are having an adverse neurological reaction to Entocort. I'm not a doctor, but I'm very confident that you will find that to be true, and once you discontinue the Entocort, your vision should return to normal. Your GI doc could have told you that, but for some reason, many doctors, (especially GI docs), are very reluctant to acknowledge adverse reactions to drugs that they prescribe, and they would rather risk a patient's health, than to acknowledge that the drug is causing the symptoms. Instead, they just prescribe more drugs, to try to counteract the symptoms caused by the first one. Please don't let your doctor's ignorance, or his hard-headedness, cause you to unnecessarily allow the possibility of permanent damage to your precious vision. It's your body, and you have the final say in how it is treated, because you are the one who has to live in it.
Remeron, (mirtazapine), is a potent tetracyclic antidepressant. Prescribing it to improve your appetite, seems like a convoluted way to resolve your issues. Probably, if you were not nauseated, you would have an appetite. Therefore, the safest way, (and the most logical way), to restore your appetite, would be to stop taking the Entocort, (and stopping it is certainly advisable, in consideration of your vision issues). Sylvia is correct, the Remeron could also be contributing to your nausea problem.
Since you react to the most commonly used meds, the diet may be your best choice for achieving remission. Unfortunately, without Entocort, to help suppress the inflammation, the diet often takes 6 months or more, to provide relief, and most of us have to cut out not only all traces of gluten, but all dairy products, also. About half of us are sensitive to soy, and all the derivatives of soy, so we have to avoid those, also. That's why food testing at Enterolab can be very valuable, to remove any question about which foods are a problem, and which ones are not.
Also, be aware that the blood tests for celiac disease are worthless for detecting the type of gluten sensitivity that we have. The sensitivity of the classic blood tests are so low, that they will only detect most cases of fully developed celiac disease, (and they will not even detect all of those). Only the stool tests offered by Enterolab, will reliably detect gluten sensivity, before celiac sprue has fully developed.
The bottom line is, even if you continue to take Entocort, it can only suppress inflammation after it is created, so you will probably have to take it forever, to maintain remission, (if you are even able to attain remission, without changing your diet). Entocort does not address the cause of the inflammation, which is an autoimmune reaction caused by gluten, and probably casein, in your diet. It makes more sense to stop the inflammation from being generated, in the first place. The decision is yours, though, because it's your body.
Incidentally, you will notice that there are no recent posts in this particular forum, (other than the thread that you started), because it's a special information forum, for archives of member's medical profiles. If you will post on one of the discussion forums, (where most members post), such as the Main Message Board, or the Discussions on Treatment Options Using Diet, and/or Medications forum, you will get many more responses.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear of your continuing problems, but hopefully you can find some solutions here.
To get right down to answering your questions, while it is true that not everyone with MC experiences nausea and appetite loss, many of us here have had those issues, including myself, so I would rate it as somewhat common. It appears that your doctor is not very familiar with the real world of MC - he's only aware of what he learned about it in med school, (which was precious little, since the medical community still considers MC to be a rare disease), and what he has read in medical journals, (most of which is either out-of-date, or just plain incorrect).
Yes, many members here have reacted adversely to Asacol, (probably, in most cases, because it contains lactose, and most of us are dairy-intolerant). Also, a few members here have found that Entocort causes nausea for them, (sometimes along with other neurological symptoms, such as vertigo). In addition to the nausea, the fact that you are experiencing vision issues, including blurred vision, pretty well verifies that you are having an adverse neurological reaction to Entocort. I'm not a doctor, but I'm very confident that you will find that to be true, and once you discontinue the Entocort, your vision should return to normal. Your GI doc could have told you that, but for some reason, many doctors, (especially GI docs), are very reluctant to acknowledge adverse reactions to drugs that they prescribe, and they would rather risk a patient's health, than to acknowledge that the drug is causing the symptoms. Instead, they just prescribe more drugs, to try to counteract the symptoms caused by the first one. Please don't let your doctor's ignorance, or his hard-headedness, cause you to unnecessarily allow the possibility of permanent damage to your precious vision. It's your body, and you have the final say in how it is treated, because you are the one who has to live in it.
Remeron, (mirtazapine), is a potent tetracyclic antidepressant. Prescribing it to improve your appetite, seems like a convoluted way to resolve your issues. Probably, if you were not nauseated, you would have an appetite. Therefore, the safest way, (and the most logical way), to restore your appetite, would be to stop taking the Entocort, (and stopping it is certainly advisable, in consideration of your vision issues). Sylvia is correct, the Remeron could also be contributing to your nausea problem.
Since you react to the most commonly used meds, the diet may be your best choice for achieving remission. Unfortunately, without Entocort, to help suppress the inflammation, the diet often takes 6 months or more, to provide relief, and most of us have to cut out not only all traces of gluten, but all dairy products, also. About half of us are sensitive to soy, and all the derivatives of soy, so we have to avoid those, also. That's why food testing at Enterolab can be very valuable, to remove any question about which foods are a problem, and which ones are not.
Also, be aware that the blood tests for celiac disease are worthless for detecting the type of gluten sensitivity that we have. The sensitivity of the classic blood tests are so low, that they will only detect most cases of fully developed celiac disease, (and they will not even detect all of those). Only the stool tests offered by Enterolab, will reliably detect gluten sensivity, before celiac sprue has fully developed.
The bottom line is, even if you continue to take Entocort, it can only suppress inflammation after it is created, so you will probably have to take it forever, to maintain remission, (if you are even able to attain remission, without changing your diet). Entocort does not address the cause of the inflammation, which is an autoimmune reaction caused by gluten, and probably casein, in your diet. It makes more sense to stop the inflammation from being generated, in the first place. The decision is yours, though, because it's your body.
Incidentally, you will notice that there are no recent posts in this particular forum, (other than the thread that you started), because it's a special information forum, for archives of member's medical profiles. If you will post on one of the discussion forums, (where most members post), such as the Main Message Board, or the Discussions on Treatment Options Using Diet, and/or Medications forum, you will get many more responses.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.
Tex (Wayne)
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 for your suggestions. I am looking to get off the Remeron and the Endocort to see if things get better. I'm just worried that I could go back to that deep dark hole. I hit an all time low when I wasn't able to carry out my duties as a mother and teacher. It looks like I am going to have to look further into changing my diet. I did look into the tests at Entrolab. The only reason why I haven't done the tests is because they said the Endocort that I am on could compromise the test results. Also I did forget to mention that the GI doc also put me on pepto in the morning and night. Two other things that I have been diagnosed with through my series of tests is hiatal hernia and vitamin D defincency. I just started the vitamin D regimen. I take 50,000iu twice a week. The next day I feel even more nauseated. I don't know if I can continue that.
I live in North Dakota, so we don't get enough sun to provide the vitamin D in our bodies. I take a supplement of vitamin D, over-the-counter, in the amount of 2,000 I.U. per softgel, daily. This would be 14,000 I.U. per week. You are taking 100,000 I.U. per week? My bottle says 2,000 = 500% of ones daily value. Don't know how much would constitute an overdose, but after looking it up on the computer, it says an "overdose" can cause bone pain, nausea, etc. however not being an expert, like I said, how much is too much?? We rely on our docs to steer us right, so?? I'm sure others may have some insight on this. Sylvia
Do good or do not
Sylvia,
Have you tested your 25(OH)D level after taking that dose for at least 3 or 4 months? My guess is that your results will still be in the lower part of the optimum range, (below 30). At that latitude, you have to take much more vitamin D, in order to get your blood level of D3, (25(OH)D, into the upper part of the optimum range, where it needs to be, with this disease. That 400 IU "normal daily limit" that your bottle label refers to, is obsolete and incorrect. People actually use at least 4 or 5 times that much, and one of these days, whoever is in charge of those recommendations, will get around to correcting that mistake.
I take 4500 IU per day, from about November through April, and I live in sunny Texas, (at a relative low latitude). During the rest of the year, I can get enough from the sun, because I spend a lot of time outdoors, actually out in the sun.
GLJ,
The dose of vitamin D3 that you are taking is safe, if you tested low, and that is the way that doctors usually prescribe D3, (as a theraputic treatment, not as a long-term maintenance dose - Sylvia is referring to a maintenance dose). However, if it makes you nauseous, then take 10,000 or 12,000 IU per day, every day, instead of those large doses, twice a week. The end result will be the same, as far as the dosage is concerned. You shouldn't take that much for more than about 8 or 10 weeks, though, before retesting, to see what effect it has had on your blood level of 25(OH)D.
Yes, since you have not been on the GF diet, if you discontinue the Entocort, your diarrhea will return. It boils down to a choice of dealing with the D, or dealing with the side effects of Entocort. For most people who are sensitive to budesonide, (the active ingredient in Entocort), the intensity of the side effects is dose-dependent. IOW, you might be able to reduce your daily dose of Entocort down to 6 mg, (two capsules), per day, and still maintain fairly good control of the D, until your gut has healed enough that the diet can control your symptoms, without any meds. A few people are able to reduce the dose to 3 mg per day, (one capsule), in order to minimize the neurological symptoms, and yet still get acceptable control of their MC symptoms, (provided that they are on the GF diet). You have to balance the benefits with the side effects, when you are sensitive to a drug, in order to find a dose that you can life with. If the side effects are totally intolerable, then you have to discontinue the drug.
Regarding testing at Enterolab, while taking Entocort: Unless you have been taking Entocort for a long time, (like a year or more), it will not significantly affect your test scores at Enterolab. The only way that it can affect your test scores, is if you have been taking it long enough that your immune system has become significantly suppressed. IOW, If your immune system is suppressed, you will not be able to produce significant amounts of IgA antibodies, which means that your stool samples will not respond to their tests. Taking Entocort for a few months, in virtually all cases, will definitely not suppress the immune system by a significant amount. Therefore, if you submit a sample to their lab, you can be sure that your test results will be accurate. Here is a copy of an e-mail, from their lab manager, in response to another member's question about that exact same issue, (written about 2 and a half years ago):
Tex
Have you tested your 25(OH)D level after taking that dose for at least 3 or 4 months? My guess is that your results will still be in the lower part of the optimum range, (below 30). At that latitude, you have to take much more vitamin D, in order to get your blood level of D3, (25(OH)D, into the upper part of the optimum range, where it needs to be, with this disease. That 400 IU "normal daily limit" that your bottle label refers to, is obsolete and incorrect. People actually use at least 4 or 5 times that much, and one of these days, whoever is in charge of those recommendations, will get around to correcting that mistake.
I take 4500 IU per day, from about November through April, and I live in sunny Texas, (at a relative low latitude). During the rest of the year, I can get enough from the sun, because I spend a lot of time outdoors, actually out in the sun.
GLJ,
The dose of vitamin D3 that you are taking is safe, if you tested low, and that is the way that doctors usually prescribe D3, (as a theraputic treatment, not as a long-term maintenance dose - Sylvia is referring to a maintenance dose). However, if it makes you nauseous, then take 10,000 or 12,000 IU per day, every day, instead of those large doses, twice a week. The end result will be the same, as far as the dosage is concerned. You shouldn't take that much for more than about 8 or 10 weeks, though, before retesting, to see what effect it has had on your blood level of 25(OH)D.
Yes, since you have not been on the GF diet, if you discontinue the Entocort, your diarrhea will return. It boils down to a choice of dealing with the D, or dealing with the side effects of Entocort. For most people who are sensitive to budesonide, (the active ingredient in Entocort), the intensity of the side effects is dose-dependent. IOW, you might be able to reduce your daily dose of Entocort down to 6 mg, (two capsules), per day, and still maintain fairly good control of the D, until your gut has healed enough that the diet can control your symptoms, without any meds. A few people are able to reduce the dose to 3 mg per day, (one capsule), in order to minimize the neurological symptoms, and yet still get acceptable control of their MC symptoms, (provided that they are on the GF diet). You have to balance the benefits with the side effects, when you are sensitive to a drug, in order to find a dose that you can life with. If the side effects are totally intolerable, then you have to discontinue the drug.
Regarding testing at Enterolab, while taking Entocort: Unless you have been taking Entocort for a long time, (like a year or more), it will not significantly affect your test scores at Enterolab. The only way that it can affect your test scores, is if you have been taking it long enough that your immune system has become significantly suppressed. IOW, If your immune system is suppressed, you will not be able to produce significant amounts of IgA antibodies, which means that your stool samples will not respond to their tests. Taking Entocort for a few months, in virtually all cases, will definitely not suppress the immune system by a significant amount. Therefore, if you submit a sample to their lab, you can be sure that your test results will be accurate. Here is a copy of an e-mail, from their lab manager, in response to another member's question about that exact same issue, (written about 2 and a half years ago):
Also, Dr. Fine, the founder of Enterolab, is the doctor who originally developed the Pepto treatment. He no longer recommends the Pepto treatment, because the only way that it is practical, is if the patient is also on the GF diet, while taking the treatment, and because a certain percentage of people get nausea, and other neurological symptoms, from taking Pepto-Bismol. Maybe your nausea is caused by the Pepto, (or maybe it is caused by the Entocort, but the Pepto makes it worse).Dear XXXXXX, Thank you for your correspondence. I will be certain to pass your kind words on to Dr. Fine. Steroid use does not usually affect our tests, unless prolonged use has caused general immunosuppression. This is not usually the case unless someone is taking immunosuppressant medications in situations like transplants or chemotherapy. Prescribed use of Entocort, therefore, should not have lowered the antibody counts of any of your tests. Please let me know if there is anything else I can do for you. Sincerely, Phyllis Zermeno, RN, BSN Clinical Manager
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! All of this information is helpful. I will talk to my doctor about maybe doing a daily dose of vitamin D instead of 50,000iu all at once. I am on the full 9mg dose daily of Entocort right now. I am getting armed with information and questions to ask my GI doc about. I'll look further into the Enterolab testing. I have discussed the GF diet with the docs and they didn't really believe I needed to do it. It is hard to do something when others don't put a lot of stock into it! I was on a GF diet for 3 weeks and I know how hard it is to follow. Especially when I have a whole family to feed as well. I am usually so tired by the end of my work day. I just want something to throw on the table for supper and call it done!
GL,
Most GI doctors are still living in the stone age, when it comes to understanding and treating MC. I can guarantee you that most of them will tell you that diet has nothing to do with MC, and yet this board has many, many members who have totally controlled their MC symptoms by diet alone. Obviously most GI docs are confused, and they're just plain wrong, about many aspects of MC.
I understand how difficult the diet is, since I've been following it for almost 8 years, now. And, you are correct, if you are going to cook for a family, and everyone else will be eating gluten, your job will be almost overwhelming, and cross-contamination will be such a problem that you will probably wind up getting "glutened" occasionally, despite your best efforts.
However, if you are going to rely on a drug to suppress your symptoms, for the rest of your life, you may have to consider using something other than Entocort, since you appear to be having an adverse reaction to it. (See my most recent post in your other thread for more information on that.) This could be a very thorny problem, since at your relatively young age, using one of the more powerful drugs, such as the immune system suppressants, (for example, one of the Anti-TNF drugs), could have very serious long-term risks/consequences.
I'm going to stop here, and finish a post on your other thread, now.
Tex
Most GI doctors are still living in the stone age, when it comes to understanding and treating MC. I can guarantee you that most of them will tell you that diet has nothing to do with MC, and yet this board has many, many members who have totally controlled their MC symptoms by diet alone. Obviously most GI docs are confused, and they're just plain wrong, about many aspects of MC.
I understand how difficult the diet is, since I've been following it for almost 8 years, now. And, you are correct, if you are going to cook for a family, and everyone else will be eating gluten, your job will be almost overwhelming, and cross-contamination will be such a problem that you will probably wind up getting "glutened" occasionally, despite your best efforts.
However, if you are going to rely on a drug to suppress your symptoms, for the rest of your life, you may have to consider using something other than Entocort, since you appear to be having an adverse reaction to it. (See my most recent post in your other thread for more information on that.) This could be a very thorny problem, since at your relatively young age, using one of the more powerful drugs, such as the immune system suppressants, (for example, one of the Anti-TNF drugs), could have very serious long-term risks/consequences.
I'm going to stop here, and finish a post on your other thread, now.
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.