Good morning,
I'm new here but have been diagnosed with MC for about 15 years. I have been on Entocort at least 3 times, Uceris once and right now I'm not on anything (except a dose of Pepto daily for the last 4 days). I will try to keep this relatively short. I have 3 kids and have noticed after my last two, I get extreme flare ups that are difficult to control for some time. After my 2nd daughter, I was diagnosed with Celiac along with MC. I was put on Uceris which felt like a miracle drug for me but then ended up getting pregnant and stopped taking it. After my 3rd daughter, my MC flared miserably and I also am suffering through postpartum anxiety. I carry most of my stress in my stomach so this has not been a good combo. The dr did an Endo and Flex Sig and said I actually don't have Celiac but still have MC. HE tried me on Entocort but with my anxiety, I just could manage through. He has now prescribed Cholestymine (sp?). Right after he prescribed it, I started taking Lexapro to try an get my anxiety under control. It wasn't until this week that I felt comfortable enough to consider trying the Cholestymine. Right before I took my first drink, I read that it can cause poor absorption of other meds, so because I need the Lexapro right now, i opted not to take it. I came across your board and saw how the Pepto may help to put me in remission. So I've been doing relatively lower doses of that daily and the frequency has gotten a little better. These are my symptoms:
Chronic diarrhea-up to 8-9 times/day during flare
severe fatigue
Dizzy when standing
Some low blood pressure reading
Low potassium (currently on Klor-Con daily)
Sometimes feel like a shell of a person
worse flares during PMS
My GI is pretty frustrated with me right now because I haven't followed his advice specifically. He has lectured me a couple of times already but the postpartum anxiety was so severe that I could barely focus on anything else. I'm now in a place where I really need help getting my stomach back on track. Should I try the Cholestymine? Will it interfere with the Lexapro? This flare has been one of my worse in a long time. The dr did mention the Pepto capsules as a possible next step if this didn't work. Should I call and just request that I move on to that?
Thank you for allowing me to participate in this group. I know no one who suffers from this so it's very difficult to navigate with little to no support.
NEW here-trying to manage a flare
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. Your symptoms are pretty typical for this disease. And so is your doctor's lack of understanding about how to properly treat MC.
Cholestyramine is a bile acid sequestrant, developed to treat diarrhea resulting from gallbladder surgery. It is somewhat effective for reducing diarrhea for a few MC patients, because it binds bile salts so that they are less likely to promote diarrhea. However, it does not address the problem that causes MC, it only treats the symptoms, so it is not a long-term solution. The problem is the inflammation that causes MC. Once MC has been triggered, certain foods in our diet cause our immune system to produce antibodies, and those antibodies promote the inflammation that causes MC. Only diet changes can eliminate the inflammation. But once the inflammation is controlled, our symptoms will fade away. Unfortunately, most GI specialists still have not learned this, and they mistakenly continue to insist that diet has nothing to do with MC.
In case you're wondering how you could suddenly become sensitive to gluten or certain other foods, research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And gluten sensitivity opens the door to other food sensitivities, because it causes increased intestinal permeability that allows peptides of partially-digested food to enter our bloodstream and eventually end up in other organs, causing additional inflammation there. This also causes our adaptive immune system to begin to produce antibodies to many of those peptides that end up in the bloodstream, and this results in a reaction against the foods from which those peptides are derived, during the digestive process.
Your doctor's claim that you don't have celiac disease is a moot point. He obviously doesn't understand MC. Virtually all of us are sensitive to gluten, whether we are celiacs or not. And many of us are even more sensitive to gluten that the average celiac. So a celiac disease diagnosis is irrelevant. Unfortunately, virtually all of us have to avoid even traces of gluten in our diet, if we hope to control/prevent our MC symptoms. Most of us are also sensitive to the primary protein in all dairy products, so we have to avoid all dairy products. And many of us also have to avoid soy, and all legumes. Some of us also have additional food sensitivities.
Anxiety and depression are very common symptoms of this disease. In most cases, those symptoms are caused by untreated gluten sensitivity. If you remove gluten from your diet, and allow time for your gut to heal, your anxiety symptoms will probably slowly disappear. Controlling MC typically results in eliminating many other autoimmune-type symptoms. Please read the thread at the link below, for some examples of what I am talking about:
Worried newbie
If we avoid our food sensitivities, we get our life back. If we continue to eat them (even small amounts or only occasionally), we will continue to be sick. It's that simple. The medications that doctors prescribe can help to suppress or mask the symptoms of MC for some patients, but the inflammation continues to be produced with every meal, and chronic inflammation has been shown to lead to the development of additional autoimmune diseases. And of course, as soon as those medications are discontinued, the symptoms return, in a perpetual cycle of inflammation. When we stop that cycle, by stopping the inflammation, then we are able to get our health back. Many of us here have been in remission for over 10 years now, simply by avoiding the foods that cause us to produce antibodies.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Your symptoms are pretty typical for this disease. And so is your doctor's lack of understanding about how to properly treat MC.
Cholestyramine is a bile acid sequestrant, developed to treat diarrhea resulting from gallbladder surgery. It is somewhat effective for reducing diarrhea for a few MC patients, because it binds bile salts so that they are less likely to promote diarrhea. However, it does not address the problem that causes MC, it only treats the symptoms, so it is not a long-term solution. The problem is the inflammation that causes MC. Once MC has been triggered, certain foods in our diet cause our immune system to produce antibodies, and those antibodies promote the inflammation that causes MC. Only diet changes can eliminate the inflammation. But once the inflammation is controlled, our symptoms will fade away. Unfortunately, most GI specialists still have not learned this, and they mistakenly continue to insist that diet has nothing to do with MC.
In case you're wondering how you could suddenly become sensitive to gluten or certain other foods, research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And gluten sensitivity opens the door to other food sensitivities, because it causes increased intestinal permeability that allows peptides of partially-digested food to enter our bloodstream and eventually end up in other organs, causing additional inflammation there. This also causes our adaptive immune system to begin to produce antibodies to many of those peptides that end up in the bloodstream, and this results in a reaction against the foods from which those peptides are derived, during the digestive process.
Your doctor's claim that you don't have celiac disease is a moot point. He obviously doesn't understand MC. Virtually all of us are sensitive to gluten, whether we are celiacs or not. And many of us are even more sensitive to gluten that the average celiac. So a celiac disease diagnosis is irrelevant. Unfortunately, virtually all of us have to avoid even traces of gluten in our diet, if we hope to control/prevent our MC symptoms. Most of us are also sensitive to the primary protein in all dairy products, so we have to avoid all dairy products. And many of us also have to avoid soy, and all legumes. Some of us also have additional food sensitivities.
Anxiety and depression are very common symptoms of this disease. In most cases, those symptoms are caused by untreated gluten sensitivity. If you remove gluten from your diet, and allow time for your gut to heal, your anxiety symptoms will probably slowly disappear. Controlling MC typically results in eliminating many other autoimmune-type symptoms. Please read the thread at the link below, for some examples of what I am talking about:
Worried newbie
If we avoid our food sensitivities, we get our life back. If we continue to eat them (even small amounts or only occasionally), we will continue to be sick. It's that simple. The medications that doctors prescribe can help to suppress or mask the symptoms of MC for some patients, but the inflammation continues to be produced with every meal, and chronic inflammation has been shown to lead to the development of additional autoimmune diseases. And of course, as soon as those medications are discontinued, the symptoms return, in a perpetual cycle of inflammation. When we stop that cycle, by stopping the inflammation, then we are able to get our health back. Many of us here have been in remission for over 10 years now, simply by avoiding the foods that cause us to produce antibodies.
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.
Thank you so much for responding. I guess I've known that dietary adjustments were necessary and I've always made excuses why I couldn't. The way I feel now is definitely not worth a cheeseburger or whatever food is triggering this misery. My diet will definitely be one of the first things I start to improve. In terms of symptomatic, would the Pepto be worth a try. I already feel weak and fatigued so I worry every time I have to go to the bathroom. I'm hoping that while I work on the inflammation, there is something I can do to slow down the 'd'?
Yes, for those of us who can tolerate it, the Pepto-Bismol treatment is an effective way to control MC symptoms. Research shows that the original Pepto treatment (as developed by Dr. Fine, consisting of 8 or 9 tablets per day for 8 weeks) in combination with a gluten-free diet, is effective for resolving diarrhea in over 90 % of cases, and in about 75 % of cases it will bring remission from the colitis. A link to an abstract of a research report can be found at the end of this paragraph. And if a lower dose will produce the same results, then we are probably better off with a lower dose. The reason I say, "for those of us who can tolerate it", is because some of us develop neurological symptoms from the bismuth subsalicylate, and others develop tinnitus, so some of us cannot tolerate it. Lower doses may not be as effective at controlling MC symptoms, but they are probably also less likely to cause side effects. As long as it doesn't cause the side effects that I mentioned, Pepto-Bismol is a safe, effective treatment for MC. If you take a lower dose, then it is safe to use for a longer period (IOW, the 8-week limit is based on a treatment rate of 8 or 9 tablets per day, or the equivalent).
Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.
Please don't misinterpret my previous post to suggest that you won't be able to get support here if you don't change your diet. We understand that everyone has to determine what is best for their own lifestyle, and we will try to help in any way we can, regardless of how you choose to deal with your MC. Of course we would rather see you change your diet, because we have found that avoiding those inflammatory foods is the only way to stop the inflammation permanently, and we definitely would like to see you get your health and your life back. But diet changes are not necessary in order to find support here. Inflammation is the cause of all autoimmune diseases, so minimizing inflammation is the key to long-term disease prevention.
The fatigue that accompanies MC is a direct result of the inflammation. Our immune system uses most of our available energy to try to suppress the inflammation, but as long as the foods we eat continue to generate additional inflammation, our immune system has a never-ending job, and it is unable to make any progress toward healing.
You're very welcome.
Tex
Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.
Please don't misinterpret my previous post to suggest that you won't be able to get support here if you don't change your diet. We understand that everyone has to determine what is best for their own lifestyle, and we will try to help in any way we can, regardless of how you choose to deal with your MC. Of course we would rather see you change your diet, because we have found that avoiding those inflammatory foods is the only way to stop the inflammation permanently, and we definitely would like to see you get your health and your life back. But diet changes are not necessary in order to find support here. Inflammation is the cause of all autoimmune diseases, so minimizing inflammation is the key to long-term disease prevention.
The fatigue that accompanies MC is a direct result of the inflammation. Our immune system uses most of our available energy to try to suppress the inflammation, but as long as the foods we eat continue to generate additional inflammation, our immune system has a never-ending job, and it is unable to make any progress toward healing.
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, and welcome to the board. As Tex said, you should try cutting out the 4 major intolerances that many of us have, gluten, dairy, soy and eggs, and see how you do. It is best to eat whole foods while trying to heal, and minimize processed foods, including gluten free processed items. You should also keep fiber to a minimum-no raw fruits (banana ok, if that works for you) or vegetables, beans, legumes. The fiber is difficult to handle while trying to heal. Eat plainly, not a lot of sauces, stick to protein (beef, chicken, turkey, pork, lamb, fish, etc...) and well cooked veggies, and rice, sweet potatoes for now. I know this is major diet change, but you won't mind if you start to improve. Enterolab offers testing to test for food sensitivities, that many of us have used and you can look up online. Gluten, soy and eggs showed up on mine. As it took a lot of time to get here, be patient, as improvement takes time, though some see differences not too long after dropping some or all of these foods. I know this must be extremely tough to deal with, with 3 young kids.
Lisa
Lisa
Hi. I have taken the Pepto with success. I didn't take any other medication. My GI started me on 6 tablets a day. After a few weeks I cut back to 4 tablets a day because I was having the opposite problem. I continued that until the end of 8 weeks. After that I have managed my symptoms by diet alone. I cut out gluten, dairy and soy. I had the EnteroLab testing and cut out other foods. As long as I stick to clean eating I do not have any issues. It's not easy, but you will find much support and guidance in this group. I was diagnosed in 9/13 and I feel like I have come such a long way since then!
Marcia
Marcia
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group, sympathies that you had to find us...
My GI prescribed Cholestymine when I was first dx - I found this group and put alot of energy into figuring out my major triggers and got off the cholestymine within a couple of months.
due to my medication requirements, the only time I could take the cholestymine was 11pm at night! make sure you clean your teeth and rinse your mouth afterwards, as it is pretty harsh on your teeth etc.
It is not a good long term option.
the sooner you can remove your major triggers, the sooner the inflammation will reduce and the D will reduce/go.
unfortunately there is not one med that works for everyone.... what works great for one person, can cause total chaos for another.
and there is no quick fix medication wise, for some there is improvement in a week, for others it take a few weeks for the medication to minimise the amount of D, and the urgency with the BM's.
Reading the posts here, and the diet changes (and lifestyle changes) people have made may seem overwhelming at first, lifechanging...
If you want to maximise long term wellness, making these changes will be worth all the effort. If you have some time, read the stories in the success stories area, alot people were in a similar place to where you are, (some were way worse) you will get an indication of how they did it and the benefits of making those changes. what medications they took during the process to reduce the D, while they made the changes.
there are lots of knowledgeable people here, caring and supporting that can help you on your journey.
Take some time to read the posts aimed at newbies, and the subsequent discussions, this will maybe answer some of your questions.
hope this helps.
My GI prescribed Cholestymine when I was first dx - I found this group and put alot of energy into figuring out my major triggers and got off the cholestymine within a couple of months.
due to my medication requirements, the only time I could take the cholestymine was 11pm at night! make sure you clean your teeth and rinse your mouth afterwards, as it is pretty harsh on your teeth etc.
It is not a good long term option.
the sooner you can remove your major triggers, the sooner the inflammation will reduce and the D will reduce/go.
unfortunately there is not one med that works for everyone.... what works great for one person, can cause total chaos for another.
and there is no quick fix medication wise, for some there is improvement in a week, for others it take a few weeks for the medication to minimise the amount of D, and the urgency with the BM's.
Reading the posts here, and the diet changes (and lifestyle changes) people have made may seem overwhelming at first, lifechanging...
If you want to maximise long term wellness, making these changes will be worth all the effort. If you have some time, read the stories in the success stories area, alot people were in a similar place to where you are, (some were way worse) you will get an indication of how they did it and the benefits of making those changes. what medications they took during the process to reduce the D, while they made the changes.
there are lots of knowledgeable people here, caring and supporting that can help you on your journey.
Take some time to read the posts aimed at newbies, and the subsequent discussions, this will maybe answer some of your questions.
hope this helps.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you so much for all the information and most importantly, the support. This morning I woke up feeling so shaky and just depleted that it's hard to feel motivated to do much. I finally have my anxiety under control and now my stomach wants to take center stage. I really want to put a hold on taking the Cholestymine right now and try the Pepto. MY GI said that would probably be his next step anyway. Can I just ask-what did you do during a flare to help yourself feel somewhat human? Supplements? Certain foods? Anything give you strength as you battle the inflammation?
There is a wealth of information on this board and I am going to take full advantage!
There is a wealth of information on this board and I am going to take full advantage!
Regarding supplements: Most of us are low on vitamin D and magnesium, and many of us are low on vitamin B-12 after we have been reacting for a while, because the disease prevents us from absorbing many vitamins and minerals from our food. Without adequate vitamin D, our immune system cannot function properly, and we cannot heal. B-12 and magnesium deficiencies can cause us to feel shaky or tense. Deficiencies of B-12 can also cause tingling, numbness, or burning skin, and magnesium deficiency can cause leg and foot cramps.
It's usually best not to take oral magnesium while recovering from MC though, because it can act as a laxative. The only form of oral magnesium that can be safely taken is magnesium glycinate. The other forms should not be used until after you are in remission. We can absorb magnesium through our skin though, without causing any digestive problems, so many members here use a magnesium spray or a magnesium lotion on their skin, or they use an Epsom salt food soak, or add Epsom salt to their bath water.
Many of us tend to experience the symptoms of hypoglucemia at times, so for some of us it works better to eat 4 or 5 smaller meals or snacks, rather than 2 or 3 large meals each day. We need more protein in our diet, because the body uses a lot of protein to heal the gut.
You will begin to feel better after the diet changes have more time to work, and as your intestines heal, you will begin to have more energy and your mood will improve.
Tex
It's usually best not to take oral magnesium while recovering from MC though, because it can act as a laxative. The only form of oral magnesium that can be safely taken is magnesium glycinate. The other forms should not be used until after you are in remission. We can absorb magnesium through our skin though, without causing any digestive problems, so many members here use a magnesium spray or a magnesium lotion on their skin, or they use an Epsom salt food soak, or add Epsom salt to their bath water.
Many of us tend to experience the symptoms of hypoglucemia at times, so for some of us it works better to eat 4 or 5 smaller meals or snacks, rather than 2 or 3 large meals each day. We need more protein in our diet, because the body uses a lot of protein to heal the gut.
You will begin to feel better after the diet changes have more time to work, and as your intestines heal, you will begin to have more energy and your mood will improve.
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
I concur with what Tex said above, Vit D, magnesium can help, but getting the eating plan right and not being in chronic inflammed state is the best way to feel better...
Rest helps, if your mind is churning a bit, use guided meditation, relaxation audio books to help calm the mind and get the mind and body into a good relaxed state.
Most of us find our 'staple' meal, the one that settles well, doesnt cause inflammation etc. For me it is chicken and gooey rice, for others it can be something different. If feeling really poorly or under extra stress, i will eat this 2-3 times a day.
Mine is gooey rice made with home made bone broth, with minced chicken only flavour is salt. I can have small amount of carrot or sweet potato. Well cooked, easy to digest meals, small amount of ingredients in the meals, small serves multiple times through the day.
lots of water to keep hydrated. It sounds bland, but it is the best thing for your body...
baby food consistency works really well, as it takes less energy for the body to digest it. in the early days of healing, most of my meals were baby food consistency.
you wont have to do this forever, it is just something for the first stage to get the body on the right path for healing.
Rest helps, if your mind is churning a bit, use guided meditation, relaxation audio books to help calm the mind and get the mind and body into a good relaxed state.
Most of us find our 'staple' meal, the one that settles well, doesnt cause inflammation etc. For me it is chicken and gooey rice, for others it can be something different. If feeling really poorly or under extra stress, i will eat this 2-3 times a day.
Mine is gooey rice made with home made bone broth, with minced chicken only flavour is salt. I can have small amount of carrot or sweet potato. Well cooked, easy to digest meals, small amount of ingredients in the meals, small serves multiple times through the day.
lots of water to keep hydrated. It sounds bland, but it is the best thing for your body...
baby food consistency works really well, as it takes less energy for the body to digest it. in the early days of healing, most of my meals were baby food consistency.
you wont have to do this forever, it is just something for the first stage to get the body on the right path for healing.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Keep in mind, our bodies take a fair bit of time to heal.
a broken bone needs support and nurturing for 8-12 weeks to heal. (and thats for a health person!)
if you are deficient in Vit d3, it may take 8-12 weeks for Vit d3 supplementation to have a noticeable difference
be patient, it will take a few weeks of nurturing with the right things to notice improvement.
a broken bone needs support and nurturing for 8-12 weeks to heal. (and thats for a health person!)
if you are deficient in Vit d3, it may take 8-12 weeks for Vit d3 supplementation to have a noticeable difference
be patient, it will take a few weeks of nurturing with the right things to notice improvement.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have a question about the antihistamine treatment-I have had allergy (mostly environmental) testing several times and all the times, drs have told me that some of my readings for grass, dust, cat are off the charts. One nurse didn't know how I was still standing after she saw my skin reactions. I don't take allergy medication or injections. Do you think that my stomach issues could be related to my severe allergies? I don't get hay fever, but curious is this is my body's response? Or I may have completely misinterpreted the information shared!
That's a good question. Classic allergies can certainly have an effect on our gut reactions, because the intestines are loaded with mast cells. Therefore classic allergies can make our GI symptoms worse. Typically, if this is the case, we will notice itching, or sneezing, or facial flush, or watery eyes, within 5 to 15 minutes after eating a food that causes such a reaction. The IgE-based reactions listed above will be followed by IgA-based reactions in the gut (IgA reactions take longer to develop — usually at least several hours). Some of us however, can also have IgE reactions in the gut, in which case we will experience D within roughly 10 to 20 minutes of eating (sometimes even sooner).
If you don't notice any of the classic IgE reaction symptoms (itching, sneezing, water eyes, etc.) promptly after or during eating, or you don't have to run to the bathroom within 15 minutes of starting to eat a meal, then you probably will not have GI issues associated with common allergies.
In general, most of the blood tests and skin tests used by allergists to detect classic allergies have little to no correlation with GI issues. Only the stool tests offered by EnteroLab are reliably accurate for determining food sensitivities that are typically associated with MC.
Tex
If you don't notice any of the classic IgE reaction symptoms (itching, sneezing, water eyes, etc.) promptly after or during eating, or you don't have to run to the bathroom within 15 minutes of starting to eat a meal, then you probably will not have GI issues associated with common allergies.
In general, most of the blood tests and skin tests used by allergists to detect classic allergies have little to no correlation with GI issues. Only the stool tests offered by EnteroLab are reliably accurate for determining food sensitivities that are typically associated with MC.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.