Rebecca,
Welcome, if you try the Cholestyramine, a few of us have found the Sandoz brand (regular) vs (lite) to be helpful. Currently I use cholestyramine in the morning and at night, along with diet changes I have been able to manage my MC symptoms. Hope you find some relief!
Feeling Lost & Confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
OH no, Salmon, my very favorite food and I eat small bites at least 3 times a week. When I say small bites I mean a tablespoon maybe 2. But if that is a food that I am sensitive to, then I will have to stop having it and the brown rice, is no problem, I can eat a bite of white.. I love to munch on 1 shrimp now and then so when my husband is having Salmon I will have a shrimp. Grrr.... I wish I read this before I ate the bite of salmon & brown rice tonight ....
Thank you for telling me this, I am sure you thought about how that info would burst my bubble but you did it for me anyway and I appreciate it ! I hope I learn more of these kinds of things about foods - what works and what foods can cause issues, the food choices I make are the only thing going to save me.
I am getting some chex cereal tomorrow, until I can get to the health food store. I feel like I will never learn all this. I am really grateful Tex you addressed what I eat most and every bit of it could be causing me to flair like this.
I know I eating doesn't work for me, my gut doesn't work, it called Gastroparesis and many people with Ehlers Danlos have this. The food doesn't move and I think it must rot and cause this leaky gut and MC.
I am still trying to understand it all. You have helped a great deal Tex. You are a gift that keeps on giving, and how wonderful you are here for so many.
Thank You !
Thank you for telling me this, I am sure you thought about how that info would burst my bubble but you did it for me anyway and I appreciate it ! I hope I learn more of these kinds of things about foods - what works and what foods can cause issues, the food choices I make are the only thing going to save me.
I am getting some chex cereal tomorrow, until I can get to the health food store. I feel like I will never learn all this. I am really grateful Tex you addressed what I eat most and every bit of it could be causing me to flair like this.
I know I eating doesn't work for me, my gut doesn't work, it called Gastroparesis and many people with Ehlers Danlos have this. The food doesn't move and I think it must rot and cause this leaky gut and MC.
I am still trying to understand it all. You have helped a great deal Tex. You are a gift that keeps on giving, and how wonderful you are here for so many.
Thank You !
Oh Donna thank you so much for this guidance on the Cholestyramine, I will for sure request this brand Sandoz.
The one the doctor in the hospital gave me ( I kept the empty package in case it worked, I am so desperate for anything- something to slow this down )
....anyway what I was given was called Cholestyramine for oral suspension USP and then it says Parr, orange flavor. I only had that one little packet so I can't say for sure if this will work, however I did have less watery D. Probably better to not have orange flavor... I am now all paranoid about everything... lol
Seriously thank you for taking the time to share this info. I am thrilled to hear you have your MC managed, this gives me such hope !
Hugs,
Rebecca
The one the doctor in the hospital gave me ( I kept the empty package in case it worked, I am so desperate for anything- something to slow this down )
....anyway what I was given was called Cholestyramine for oral suspension USP and then it says Parr, orange flavor. I only had that one little packet so I can't say for sure if this will work, however I did have less watery D. Probably better to not have orange flavor... I am now all paranoid about everything... lol
Seriously thank you for taking the time to share this info. I am thrilled to hear you have your MC managed, this gives me such hope !
Hugs,
Rebecca
Rebecca,
I didn't mean to imply that the possibility that salmon might be a problem was chiseled in stone — it's just a risk to be aware of. For example, if you want to design a bullet-proof recovery diet then it would probably be a food that you would want to avoid until you are in remission and then you can safely test it to verify whether or not it is actually a problem. The tiny amount of brown rice you are eating now might not be a problem. The risk that fiber poses depends on the dose. The more fiber in our diet (from all foods) the higher the risk of reacting to it. But it's always best to minimize fiber while recovering, in order to reduce the risk that it might interfere with your recovery.
Quite a few of us have had problems with gastroparesis early on, including me. It's a well-known symptom of diabetes (in some cases), so it's very likely that it's caused by a magnesium deficiency (because magnesium deficiency is so closely associated with insulin resistance and diabetes). Muscles cannot properly relax without adequate magnesium (including the pyloric sphincter). Instead they tend to clinch and spasm. Those of us who have had nausea as a symptom of MC (like me) almost surely are/were magnesium deficient at the time.
And yes, during recovery we need to avoid flavorings, seasonings, dyes, and additives in general, especially artificial sweeteners.
You're very welcome,
Tex
I didn't mean to imply that the possibility that salmon might be a problem was chiseled in stone — it's just a risk to be aware of. For example, if you want to design a bullet-proof recovery diet then it would probably be a food that you would want to avoid until you are in remission and then you can safely test it to verify whether or not it is actually a problem. The tiny amount of brown rice you are eating now might not be a problem. The risk that fiber poses depends on the dose. The more fiber in our diet (from all foods) the higher the risk of reacting to it. But it's always best to minimize fiber while recovering, in order to reduce the risk that it might interfere with your recovery.
Quite a few of us have had problems with gastroparesis early on, including me. It's a well-known symptom of diabetes (in some cases), so it's very likely that it's caused by a magnesium deficiency (because magnesium deficiency is so closely associated with insulin resistance and diabetes). Muscles cannot properly relax without adequate magnesium (including the pyloric sphincter). Instead they tend to clinch and spasm. Those of us who have had nausea as a symptom of MC (like me) almost surely are/were magnesium deficient at the time.
And yes, during recovery we need to avoid flavorings, seasonings, dyes, and additives in general, especially artificial sweeteners.
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.
Thanks Tex, and I totally get that I don't yet have a clear picture of what foods I am reacting to. However it's not going to be hard to figure out. I can only eat 7-8 things. I figured out very early on that I haven't been able tolerate any fiber since I got struck down with the gastroparesis 3 years ago.
I could do a tablespoon of brown rice ( fiber) but that's it, the white rice is much more agreeable with me, and I buy it at Trader Joes) . When I went off the feeding tube (the first time 8 months ago) I tried lots of foods to see which ones would move through my gut with the least amount of pain and vomiting and guess what that food was? Pasta, oh yah, I can eat about 1/4 cup of pasta and not have pain, I found I could swallow pasta, my throat doesn't hardly work so I have to find things soft like that.
This is all I have eaten in 3 years and each item has been just a bite of, (I am in starvation for the last 8 months, keytones in urine are a 3+)
The only foods I have eaten are, pasta, tomato sauce, salmon with crushed almonds on top, green beans with garlic, rice, egg, raspberries, chocolate in some soft form, coffee 1/2 c -1 c with stevia and a dot of cream ( takes all day to get that much coffee down ) some plain grilled chicken slice, rice ( white jasmine mostly and some brown) oat cereal, I found Avocados weren't agreeing with me so I took those out. That's it, that is all I can eat, either for swallowing purposes or those foods cause less pain in gut.
So in looking at my list, I would say take out the garlic, tomato sauce, almonds, salmon, raspberries, chocolate, coffee & cream , egg, brown rice, oat cereal. I don't cook my green beans to mush and I read in here that they should be cooked pretty good, so I will start doing that. The pasta I am stopping and getting a GF one, so that's seems an easy fix. But in my current state, with these changes I am worried my body will be starving even more. (I say body will be starving because I feel no hunger anymore.)
Most foods cause me severe pain, I haven't been able to eat any salad's for a very long time or bananas, bread & meats. I feel like I have eaten Thanksgiving dinner and Xmas dinner back to back 24/7, that feeling is never gone. I just walk around all the time saying "I am so full" If I force myself to eat it makes me really sick and I try to vomit, but the gut and throat muscles don't work and I can't move food up and out. I relux something awful and it gets into my lungs. Sadly food has become my enemy, the pain of getting it down and out is just awful and it is over the top painful when it just sits in my gut.
I have always tried to make good food choices, and all of my shopping is mostly on the outer perimeter of a food store, no processed stuff from the middle isles. I can adapt to just about anything, but with this MC problem my weight loss is making me feel pretty fatalistic.
I bought two of your books on Amazon, Vit D and The MC one, I will amp up the D and mag, which I have been taking large amounts of for some time but will look at increasing it. I have been doing the powdered Calm for 2 years, it helped with the C and it helps with breathing. I have had many small bags of mag IV's into me, almost every ER visit, I get this. I have used the mag spray for over a year. I think for sure I need to up the Vit D after all I have read in here.
Thanks for all your great insight and you have given me some direction that I feel will help tame this MC flare.
What's needed for people with MC and other gut issues is a center that a person could check into for 2 weeks ( or longer) and learn about foods, shopping, reading labels, preparation and supplements ! Learning that drugs aren't fixing anything, they just treat the symptoms not the cause. That to me would be practicing medicine. But at least we have this forum and I know this is where I want and need to be !
Hugs,
Rebecca
I could do a tablespoon of brown rice ( fiber) but that's it, the white rice is much more agreeable with me, and I buy it at Trader Joes) . When I went off the feeding tube (the first time 8 months ago) I tried lots of foods to see which ones would move through my gut with the least amount of pain and vomiting and guess what that food was? Pasta, oh yah, I can eat about 1/4 cup of pasta and not have pain, I found I could swallow pasta, my throat doesn't hardly work so I have to find things soft like that.
This is all I have eaten in 3 years and each item has been just a bite of, (I am in starvation for the last 8 months, keytones in urine are a 3+)
The only foods I have eaten are, pasta, tomato sauce, salmon with crushed almonds on top, green beans with garlic, rice, egg, raspberries, chocolate in some soft form, coffee 1/2 c -1 c with stevia and a dot of cream ( takes all day to get that much coffee down ) some plain grilled chicken slice, rice ( white jasmine mostly and some brown) oat cereal, I found Avocados weren't agreeing with me so I took those out. That's it, that is all I can eat, either for swallowing purposes or those foods cause less pain in gut.
So in looking at my list, I would say take out the garlic, tomato sauce, almonds, salmon, raspberries, chocolate, coffee & cream , egg, brown rice, oat cereal. I don't cook my green beans to mush and I read in here that they should be cooked pretty good, so I will start doing that. The pasta I am stopping and getting a GF one, so that's seems an easy fix. But in my current state, with these changes I am worried my body will be starving even more. (I say body will be starving because I feel no hunger anymore.)
Most foods cause me severe pain, I haven't been able to eat any salad's for a very long time or bananas, bread & meats. I feel like I have eaten Thanksgiving dinner and Xmas dinner back to back 24/7, that feeling is never gone. I just walk around all the time saying "I am so full" If I force myself to eat it makes me really sick and I try to vomit, but the gut and throat muscles don't work and I can't move food up and out. I relux something awful and it gets into my lungs. Sadly food has become my enemy, the pain of getting it down and out is just awful and it is over the top painful when it just sits in my gut.
I have always tried to make good food choices, and all of my shopping is mostly on the outer perimeter of a food store, no processed stuff from the middle isles. I can adapt to just about anything, but with this MC problem my weight loss is making me feel pretty fatalistic.
I bought two of your books on Amazon, Vit D and The MC one, I will amp up the D and mag, which I have been taking large amounts of for some time but will look at increasing it. I have been doing the powdered Calm for 2 years, it helped with the C and it helps with breathing. I have had many small bags of mag IV's into me, almost every ER visit, I get this. I have used the mag spray for over a year. I think for sure I need to up the Vit D after all I have read in here.
Thanks for all your great insight and you have given me some direction that I feel will help tame this MC flare.
What's needed for people with MC and other gut issues is a center that a person could check into for 2 weeks ( or longer) and learn about foods, shopping, reading labels, preparation and supplements ! Learning that drugs aren't fixing anything, they just treat the symptoms not the cause. That to me would be practicing medicine. But at least we have this forum and I know this is where I want and need to be !
Hugs,
Rebecca
With Ehlers Danlos a lot of of the issues are mechanical and have nothing what so ever to do with diet and vitamins, except in the case of Mag, this helps the swallowing muscles ( I have found )
All my tests for the mechanical parts of swallowing, digesting, bowel and my autonomic system have come in showing exactly what isn't working. My BP is 60/48 and most of the time the cuff can't even register a BP - especially on standing. I take the Northera to help with that.
These are all mechanical things with no fix.
On the outside of my body you can see all the floppiness, stretchy-ness, double jointed -ness. What can't be seen is that the inside of me is in exactly the same condition. Most of my internal organs have pro-lasped, everything is floppy. Blood vessels burst for no reason. What I need are braces for the insides of me....like I use for the outside of my body. Nice new stiff pipes would fix me right up !
All my tests for the mechanical parts of swallowing, digesting, bowel and my autonomic system have come in showing exactly what isn't working. My BP is 60/48 and most of the time the cuff can't even register a BP - especially on standing. I take the Northera to help with that.
These are all mechanical things with no fix.
On the outside of my body you can see all the floppiness, stretchy-ness, double jointed -ness. What can't be seen is that the inside of me is in exactly the same condition. Most of my internal organs have pro-lasped, everything is floppy. Blood vessels burst for no reason. What I need are braces for the insides of me....like I use for the outside of my body. Nice new stiff pipes would fix me right up !
Rebecca,
Just wanted to say welcome to the family, sorry you had to find us and am glad you are feeling hopeful. I just wanted to leave a note about the ReMag. I agree with Tex to try the other versions first to see if you respond, but with your multitude of issues, pill form might be tough for you to absorb. The beauty of the ReMag is you can put it in a spray bottle and use it topically just like your ancient minerals, and also use it orally in tiny amounts as you see fit! It changed my world and just wanted to leave a note about it. Not that you want to do any more research or reading but RnA ReSet.com has a lot of info and a radio show that answers many questions. After joining this forum (learning from the "magnesium masters") and learning from Carolyn Dean, I really feel that nutrient deficiencies have gotten us into this mess of " Total Body Meltdown ". Sounds negative but there are ways out. For some it shows up in the gut, for others its the nervous system, etc.....This is a wonderful forum full of knowledge thats tough to find anywhere else.
Slowly making the diet and supplement changes will make a difference!
Just wanted to say welcome to the family, sorry you had to find us and am glad you are feeling hopeful. I just wanted to leave a note about the ReMag. I agree with Tex to try the other versions first to see if you respond, but with your multitude of issues, pill form might be tough for you to absorb. The beauty of the ReMag is you can put it in a spray bottle and use it topically just like your ancient minerals, and also use it orally in tiny amounts as you see fit! It changed my world and just wanted to leave a note about it. Not that you want to do any more research or reading but RnA ReSet.com has a lot of info and a radio show that answers many questions. After joining this forum (learning from the "magnesium masters") and learning from Carolyn Dean, I really feel that nutrient deficiencies have gotten us into this mess of " Total Body Meltdown ". Sounds negative but there are ways out. For some it shows up in the gut, for others its the nervous system, etc.....This is a wonderful forum full of knowledge thats tough to find anywhere else.
Slowly making the diet and supplement changes will make a difference!Vanessa
Thank You so much Vanessa for your kind welcome ! Also thank you for saying "Slowly making the diet and supplement changes will make a difference!" Sounds like you have had improvements with the changes you made in diet and supplements . Nothing better then hearing from real people who have done the work !
I agree no pills are going to work for me and I can't swallow most anyway.
I have been on the Calm mag powder and spray Mag for a very long time. Also the ER always gives it to me IV because it helps the muscles that do the breathing. I have a very good response to the Calm powder, I took massive high doses of it when I had horrid C.
I stopped it 5 months ago due to the new D I started having. Now from what I am learning in here I need to get back on it, you can understand my confusion with it as I was using it to help the C, so naturally when I switched to the D, I thought I shouldn't use it.
I have never stopped the Ancient spray Mag though - because I never ever felt it did a thing for the C, it doesn't seem to work the same for bowel issues in trans-dermal form.. I have been totally convinced about the benefits of Mag for a very long time.
Right now I am frustrated with what Vit D to get.... it can't be pills, and the under the tongue stuff doesn't seem to be raising my levels, well it raised them some I went from 9 to 25, on 5,000 a day ... but I have been stuck at that level of 25 for many months.
I think Gabes mentioned having our Vit D around 50 would be better. I am looking at getting a better Vit D, drops or patches.
Any advice would be greatly appreciated !
Thank you & Hugs Vanessa !
I agree no pills are going to work for me and I can't swallow most anyway.
I have been on the Calm mag powder and spray Mag for a very long time. Also the ER always gives it to me IV because it helps the muscles that do the breathing. I have a very good response to the Calm powder, I took massive high doses of it when I had horrid C.
I stopped it 5 months ago due to the new D I started having. Now from what I am learning in here I need to get back on it, you can understand my confusion with it as I was using it to help the C, so naturally when I switched to the D, I thought I shouldn't use it.
I have never stopped the Ancient spray Mag though - because I never ever felt it did a thing for the C, it doesn't seem to work the same for bowel issues in trans-dermal form.. I have been totally convinced about the benefits of Mag for a very long time.
Right now I am frustrated with what Vit D to get.... it can't be pills, and the under the tongue stuff doesn't seem to be raising my levels, well it raised them some I went from 9 to 25, on 5,000 a day ... but I have been stuck at that level of 25 for many months.
I think Gabes mentioned having our Vit D around 50 would be better. I am looking at getting a better Vit D, drops or patches.
Any advice would be greatly appreciated !
Thank you & Hugs Vanessa !
I take Orthomolecular Products Vit D3/k2 drops. I get them on amazon. They used to be 30 bucks and recently went up to 50! I got em anyway as they last me a long time. I have to take 10,000 IUs daily because of my genetics. These are good quality and keep my level in the 60s....You are welcome and big love back at you!
Vanessa
Have to vent.... Total frustration here, how am I ever going to clear up this MC with that horrid TPN dripping into my veins, it is all full of SOY !!
Now I may not be sensitive to the soy as I have been off the feeding tube for 8 months and for 5 of those months I have had this D going on, with no soy even going into me....
Now I am back on a feeding tube via a picc line for just 7 days. Do you all have issues with soy ??
Now I may not be sensitive to the soy as I have been off the feeding tube for 8 months and for 5 of those months I have had this D going on, with no soy even going into me....
Now I am back on a feeding tube via a picc line for just 7 days. Do you all have issues with soy ??
-
Gabes-Apg
- Emperor Penguin
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Breathe
we are going to takes things a step at a time
right now, with your current situation you can not do everything perfectly. For now, eliminate the major triggers that you can, see if the cholestryamine along with increased VIt D3 intake and increased use of topical magnesium settles things down WD wise.
then as time goes on, you can look to adjust other aspects of your current regime.
we are going to takes things a step at a time
right now, with your current situation you can not do everything perfectly. For now, eliminate the major triggers that you can, see if the cholestryamine along with increased VIt D3 intake and increased use of topical magnesium settles things down WD wise.
then as time goes on, you can look to adjust other aspects of your current regime.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Janie you're in REMISSION !! That is awesome ! Thank you Thank You for sharing that. I am anxious to read about all of you and how the change in your diets has helped, but I am so busy reading about all the foods & vitamins first.
Hearing about your remission is the best new ever !
I sorta have a bit of good news myself, I didn't have my usual 1/2 of hard boiled egg this morning and as a result of this I have not had the usual 8 trips to the bathroom..... Isn't this amazing, that darn egg for sure doesn't agree with me.
My sweet husband got up extra early and went to the store to get me some Chex GL corn cereal so I would have a nibble of something
this morning. I have eaten about 8 of the squares and no bathroom trip... yet... I remain guarded though.
Tonight I will eat 1 shrimp and 2 Tablespoons of jasmine rice from Trader Joe's. ( thankfully I have it on hand)
There isn't a TPN lipid formula available without soy. If I can get the D under control I could get off the TPN. So I will remain focused on that.
Thanks again Janie and thanks for that very sweet little huggie dude !!
Hearing about your remission is the best new ever !
I sorta have a bit of good news myself, I didn't have my usual 1/2 of hard boiled egg this morning and as a result of this I have not had the usual 8 trips to the bathroom..... Isn't this amazing, that darn egg for sure doesn't agree with me.
My sweet husband got up extra early and went to the store to get me some Chex GL corn cereal so I would have a nibble of something
this morning. I have eaten about 8 of the squares and no bathroom trip... yet... I remain guarded though.
Tonight I will eat 1 shrimp and 2 Tablespoons of jasmine rice from Trader Joe's. ( thankfully I have it on hand)
There isn't a TPN lipid formula available without soy. If I can get the D under control I could get off the TPN. So I will remain focused on that.
Thanks again Janie and thanks for that very sweet little huggie dude !!