After years of ignoring frequent, soft bowel movements, it got to where I couldn't ignore it any longer. I have some pain occasionally, but not near as severe as many people seem to have. Anyway, I had a colonoscopy a few weeks ago and it was fine. However, the biopsies showed lymphocytic colitis. I've now been put on cholestyramine, which I will start tomorrow morning because the pharmacy had to order it, and a low residue diet. I am scheduled for a Hydrogen Breath Test on Monday to check for lactose and fructose malabsorption.
I'm afraid the diet will be worse than the D. I love raw veggies, I only eat whole wheat breads and pastas, I crave Diet Coke, I live in South Texas where Mexican food is abundant and delicious.....
From what I've read, most people follow the diet religiously when they are having flare ups, and then seek to determine what their body can tolerate when they're not. I figure I'll learn to live without Diet Coke, but broccoli, cauliflower, and Mexican food will be more difficult.
Anyway, as you can tell, I'm fighting this a bit, but I can do it. How much success have you all had with Cholestyramine?
I should also mention that I take Coumadin/Warfarin for a mechanical heart valve, so expect some changes with that when my diet changes so drastically.
Thanks.
Another Newbie - Cholestyramine
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
Hi Lisa,
Welcome to the board. I live in Central Texas, about halfway between Austin and Waco. We have quite a few members from Texas on this board.
Unfortunately, the food sensitivity issue is almost certainly more serious than your doctor has led you to believe. While it's true that fiber is a problem for us, and it can prevent healing, the source of the inflammation that causes MC in the first place is not fiber -- it's certain proteins in our diet. Most of us are sensitive to gluten (despite negative celiac blood test results), and casein (the primary protein in all dairy products). About half of us are also sensitive to soy and most legumes. Of course, as long as we have enteritis, we are also lactose-intolerant, but lactose is a minor problem -- it's the casein in dairy that causes the inflammation, not the lactose. Lactose intolerance is simply an inability to digest lactose. Casein sensitivity (similar to gluten sensitivity) causes the production of antibodies and T cells that promote the inflammation that results in LC.
Only a handful of GI specialists recognize that food sensitivities are the source of the inflammation with MC, and that's why so few GI docs have any success treating the disease. Most of them prescribe a corticosteroid or a mesalamine-based drug, but as soon as the drug is discontinued, the patient relapses (unless they have removed all food sensitivities from their diet and allowed sufficient time for healing).
Cholestyramine is a bile acid sequestrant, and it does nothing to address the inflammation. IOW, it treats the symptom of diarrhea (D), but does not treat the source of the inflammation, so the damage to the intestines continues to accrue. Some members find that it helps to control the D while they're waiting for the diet to take effect, but others find that it either makes no difference, or makes their symptoms worse. For some people, it causes severe cramps. Sometimes the cramps can be minimized by adjusting the dose. Doctors who don't understand how to treat MC prescribe cholestyramine because constipation is a listed side effect (and that's why many people experience cramps if they take it).
It's worth a try, but you will need to rely on diet changes to control the inflammation, in order to reach stable long-term remission.
I take Plavix (or rather clopidogrel, now that a generic is available), but as far as I'm aware, diet is not an issue with it. I'm not sure that diet will affect warfarin, but please be aware that cholestyramine will definitely affect it. The cholestyramine will reduce the total anticoagulant effect of warfarin by approximately 25%.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1429341/
FWIW, broccoli is not a problem for most of us, except that it can cause gas, and I find that Mexican food fits in rather well with a gluten-free, dairy-free diet, (just avoid flour tortillas and cheese). In Texas, most corn tortillas appear to be gluten-free, especially the Mexican brands. Unfortunately that's not true in all states. Of course, until your gut has sufficient time to heal, it's best to avoid spicy foods, since they can cause D, but after I healed for a year or two, I was able to eat jalapeños, etc., without any problems.
Artificial sweeteners are a problem for most of us, but drinks sweetened with cane sugar (in moderation) are usually safe, and contrary to what most GI docs recommend, unless coffee caused you to have D before you developed LC, it shouldn't cause any problems now. Just be careful what you put in it, because most so-called non-dairy coffee sweeteners actually contain dairy (casein), and they cause us to react. We use substitute milks such as almond milk, coconut milk, hemp milk, etc.
Again, welcome to the board, and please feel free to ask anything.
Tex (Wayne)
Welcome to the board. I live in Central Texas, about halfway between Austin and Waco. We have quite a few members from Texas on this board.
Unfortunately, the food sensitivity issue is almost certainly more serious than your doctor has led you to believe. While it's true that fiber is a problem for us, and it can prevent healing, the source of the inflammation that causes MC in the first place is not fiber -- it's certain proteins in our diet. Most of us are sensitive to gluten (despite negative celiac blood test results), and casein (the primary protein in all dairy products). About half of us are also sensitive to soy and most legumes. Of course, as long as we have enteritis, we are also lactose-intolerant, but lactose is a minor problem -- it's the casein in dairy that causes the inflammation, not the lactose. Lactose intolerance is simply an inability to digest lactose. Casein sensitivity (similar to gluten sensitivity) causes the production of antibodies and T cells that promote the inflammation that results in LC.
Only a handful of GI specialists recognize that food sensitivities are the source of the inflammation with MC, and that's why so few GI docs have any success treating the disease. Most of them prescribe a corticosteroid or a mesalamine-based drug, but as soon as the drug is discontinued, the patient relapses (unless they have removed all food sensitivities from their diet and allowed sufficient time for healing).
Cholestyramine is a bile acid sequestrant, and it does nothing to address the inflammation. IOW, it treats the symptom of diarrhea (D), but does not treat the source of the inflammation, so the damage to the intestines continues to accrue. Some members find that it helps to control the D while they're waiting for the diet to take effect, but others find that it either makes no difference, or makes their symptoms worse. For some people, it causes severe cramps. Sometimes the cramps can be minimized by adjusting the dose. Doctors who don't understand how to treat MC prescribe cholestyramine because constipation is a listed side effect (and that's why many people experience cramps if they take it).
It's worth a try, but you will need to rely on diet changes to control the inflammation, in order to reach stable long-term remission.
I take Plavix (or rather clopidogrel, now that a generic is available), but as far as I'm aware, diet is not an issue with it. I'm not sure that diet will affect warfarin, but please be aware that cholestyramine will definitely affect it. The cholestyramine will reduce the total anticoagulant effect of warfarin by approximately 25%.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1429341/
FWIW, broccoli is not a problem for most of us, except that it can cause gas, and I find that Mexican food fits in rather well with a gluten-free, dairy-free diet, (just avoid flour tortillas and cheese). In Texas, most corn tortillas appear to be gluten-free, especially the Mexican brands. Unfortunately that's not true in all states. Of course, until your gut has sufficient time to heal, it's best to avoid spicy foods, since they can cause D, but after I healed for a year or two, I was able to eat jalapeños, etc., without any problems.
Artificial sweeteners are a problem for most of us, but drinks sweetened with cane sugar (in moderation) are usually safe, and contrary to what most GI docs recommend, unless coffee caused you to have D before you developed LC, it shouldn't cause any problems now. Just be careful what you put in it, because most so-called non-dairy coffee sweeteners actually contain dairy (casein), and they cause us to react. We use substitute milks such as almond milk, coconut milk, hemp milk, etc.
Again, welcome to the board, and please feel free to ask anything.
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.
Lisa, welcome.
All of us have been where you are, and some of us still are (
) in many respects. Except for Mexican food (never been able to eat spicy, nor do I love re-fried beans)I ate very much like you do. However, when I walk around the market and reach out my hand to take a forbidden food I remember what it does to me, how sick I will be, and my hand comes back of it's own accord.
I have been creative in making the food I CAN eat as appetizing as I can. The ice cream I can make with coconut milk has kept me sane and decreased my longing for other stuff. As I (hopefully) heal, I have begun to make a glass of fresh fruit and veggie juice every morning. It's a great breakfast, and if I could I would add some protein, but I can't tolerate the protein powders available, so I don't. However, I make sure I get protein via meat or fish, because it is necessary for healing to take place.
I found it way better to flow with the disease rather than fight it, because you heal faster that way. I seem to be a slow healer, but maybe, once you find what is causing your problem you will be a fast one, and be able to tolerate more foods quicker.
All of us have been where you are, and some of us still are (
) in many respects. Except for Mexican food (never been able to eat spicy, nor do I love re-fried beans)I ate very much like you do. However, when I walk around the market and reach out my hand to take a forbidden food I remember what it does to me, how sick I will be, and my hand comes back of it's own accord.I have been creative in making the food I CAN eat as appetizing as I can. The ice cream I can make with coconut milk has kept me sane and decreased my longing for other stuff. As I (hopefully) heal, I have begun to make a glass of fresh fruit and veggie juice every morning. It's a great breakfast, and if I could I would add some protein, but I can't tolerate the protein powders available, so I don't. However, I make sure I get protein via meat or fish, because it is necessary for healing to take place.
I found it way better to flow with the disease rather than fight it, because you heal faster that way. I seem to be a slow healer, but maybe, once you find what is causing your problem you will be a fast one, and be able to tolerate more foods quicker.
My doctor prescribed Cholestyrammine for me also. i've been taking it for about 2 weeks now.
I have to say though, I've noticed i can be feeling okay, but after i drink this stuff, I feel bloated,
gassy and have horrible indigestion. It just seems to make me feel bad all around.
That's just my reaction and belief though. Might not effect others the same way.
I've decided tonight was the last time I'm taking it. See how it goes.
I have to say though, I've noticed i can be feeling okay, but after i drink this stuff, I feel bloated,
gassy and have horrible indigestion. It just seems to make me feel bad all around.
That's just my reaction and belief though. Might not effect others the same way.
I've decided tonight was the last time I'm taking it. See how it goes.
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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
As long as we carefully follow our personal treatment program (whether it's diet, meds, or a combination), we will remain in remission (and our intestinal histology will be normal). If we slip up, we will relapse (and our intestinal biopsies will show the markers of MC). Once the genes are triggered, the disease and the corresponding food sensitivities are forever.
IOW, there is no cure for the disease, but we can definitely control the symptoms, and prevent additional autoimmune diseases from developing.
Tex
IOW, there is no cure for the disease, but we can definitely control the symptoms, and prevent additional autoimmune diseases from developing.
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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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
I completed my lactose malabsorption test this morning (hydrogen breath test) and it was negative. I didn't think that dairy was an issue for me, but it's nice to have confirmation. I have a fructose malabsorption test scheduled for Friday. After a week with no Diet Coke, I'm excited to get to drink a Coke for the test!
I've only taken the Cholestyramine twice and haven't had any of the discomfort that some people have. Even before I started taking this medicine, the low fiber/low fat diet seems to have helped. My stomach is still making a lot of noise, but the D has lessened to only 3 times yesterday and once so far today.
I've only taken the Cholestyramine twice and haven't had any of the discomfort that some people have. Even before I started taking this medicine, the low fiber/low fat diet seems to have helped. My stomach is still making a lot of noise, but the D has lessened to only 3 times yesterday and once so far today.
Lisa
Lisa, I don't know if you are feeling better and how much you have changed your diet, but you missed the point that Tex was trying to make. LACTOSE IS NOT THE PROBLEM, THE PROTIEN IN THE DAIRY IS. And gluten is the number one inflammation producer. If you don't try to go GF at least for a couple of months, you will never see if it's what is causing you problems. I didn't want to believe it either, but once I went GF,DF,and SF, my symptoms are almost gone ( with help from a drug called entocort). Good luck
Leah
Leah
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Lisa
I know it is hard to think of diet change. Most of us felt like you....hard to give up the good stuff. But you really can be creative and eat well. I'm in California and eat Mexican food often. As Tex said, get rid of the cheese and the flour tortillas and go for it (read all labels and ask about ingredients in restaurants).
Gluten free is a must. If its too much to eliminate dairy too then go slowly and see where you are after a few weeks. FYI I was lucky and could eat most raw veggies after a couple of months. It sounds like your symptoms aren't terribly severe. Maybe you will heal quickly. Follow the recommendations here. They all live with the disease and share information about what works. I have learned far more from the people here than I did in any Doctor's office.
Christine
I know it is hard to think of diet change. Most of us felt like you....hard to give up the good stuff. But you really can be creative and eat well. I'm in California and eat Mexican food often. As Tex said, get rid of the cheese and the flour tortillas and go for it (read all labels and ask about ingredients in restaurants).
Gluten free is a must. If its too much to eliminate dairy too then go slowly and see where you are after a few weeks. FYI I was lucky and could eat most raw veggies after a couple of months. It sounds like your symptoms aren't terribly severe. Maybe you will heal quickly. Follow the recommendations here. They all live with the disease and share information about what works. I have learned far more from the people here than I did in any Doctor's office.
Christine