Hi, Polly!
Thank you!
~ Holly
Shifting perspective on IBS - ScienceNordic article
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Thanks Polly,
I also decided to request the regular Questran today too....just didn't feel like that nutrasweet stuff was helping me....and if I add another one between dinner and bed I'd like to see some results within this 30 day trial that at least something may be trying to work. I have absolutely "0" constipation I feel at this point it would take a whole brick of cheese to plug this person up....(if I didn't react to it ofcourse
)
I appreciate knowing I'm on the right track in the approach on how to take it.
Big Hugs!
Erica
I also decided to request the regular Questran today too....just didn't feel like that nutrasweet stuff was helping me....and if I add another one between dinner and bed I'd like to see some results within this 30 day trial that at least something may be trying to work. I have absolutely "0" constipation I feel at this point it would take a whole brick of cheese to plug this person up....(if I didn't react to it ofcourse
)I appreciate knowing I'm on the right track in the approach on how to take it.
Big Hugs!
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Ok....for all of you that are following this post I feel I'm ready to divulge how I am feeling while taking the cholestryamine.
The first couple weeks were iffy due to the fake sugar Rx but now these last two weeks that I have been on the Sucrose Rx I believe I am seeing results I didn't think possible. I didn't see immediate results either...it has taken almost the whole month to see the results now, plus I have a better attitude and am more gung-ho than I have ever been.
I am only taking maybe 3 grams of powder a day in the morning only. I could not do 2 times a day because I was getting light headed and just didn't feel right. I'm on a maintenance dose now because I AM Responding to it!
Incredible as it seems as soon as I have plateaued and noticed the yellowing at every BM I am now not noticing any yellowing and the BM's are starting to turn into pencils and it has been almost 4 weeks to the day since I started it.
I pass gas (although I'm still scared without being on a toilet still), I am not running to the toilet (unless it is morning and I ignore the fact that my body is telling me it is time to do a normal morning duty....then I sprint to the loo)
Am I well-healed-normal....probably not, lol...but I have decided that I can stop feeling sorry for myself and living in a pity pot world and just start doing things again. I know I wont be able to eat everything I am introduced to...I'm going to try to be and feel as normal as I can from now on....if it means I need to maintain on the cholestyramine then so be it, at least I feel like I am getting my life back.
Thanks again Polly!!! I may not have ventured this direction due to it being a prescription had it not been for your encouragement since I really didn't want to have be tied to a med the rest of my life...but if this is what does it for me in the long run so be it! I may be able to taper it a bit more at some point...who knows
Love
Erica
The first couple weeks were iffy due to the fake sugar Rx but now these last two weeks that I have been on the Sucrose Rx I believe I am seeing results I didn't think possible. I didn't see immediate results either...it has taken almost the whole month to see the results now, plus I have a better attitude and am more gung-ho than I have ever been.
I am only taking maybe 3 grams of powder a day in the morning only. I could not do 2 times a day because I was getting light headed and just didn't feel right. I'm on a maintenance dose now because I AM Responding to it!
Incredible as it seems as soon as I have plateaued and noticed the yellowing at every BM I am now not noticing any yellowing and the BM's are starting to turn into pencils and it has been almost 4 weeks to the day since I started it.
I pass gas (although I'm still scared without being on a toilet still), I am not running to the toilet (unless it is morning and I ignore the fact that my body is telling me it is time to do a normal morning duty....then I sprint to the loo)
Am I well-healed-normal....probably not, lol...but I have decided that I can stop feeling sorry for myself and living in a pity pot world and just start doing things again. I know I wont be able to eat everything I am introduced to...I'm going to try to be and feel as normal as I can from now on....if it means I need to maintain on the cholestyramine then so be it, at least I feel like I am getting my life back.
Thanks again Polly!!! I may not have ventured this direction due to it being a prescription had it not been for your encouragement since I really didn't want to have be tied to a med the rest of my life...but if this is what does it for me in the long run so be it! I may be able to taper it a bit more at some point...who knows
Love
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Oh, Erica!
I am so thrilled for you! Thank you for sharing all your steps with us, and how wonderful that your courage to try something new has given you back so much that is positive! Hip-hip-hooray!!!!
(I may still try the cholestyramine! For now, I'm focusing on my magnesium deficiency.)
Cheers!
~ Holly
I am so thrilled for you! Thank you for sharing all your steps with us, and how wonderful that your courage to try something new has given you back so much that is positive! Hip-hip-hooray!!!!
(I may still try the cholestyramine! For now, I'm focusing on my magnesium deficiency.)
Cheers!
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
Thanks for the encouragement everyone....I have made one more balance to it all by doing 3 oz morning and night and I am seeing better results. How long I will end up doing this I guess depends on my body and if it starts to act as a constipation aid, then I suspect I will be able to adjust accordingly.
It can't hurt Brandy! I have found that the sand has come a long ways and I don't really notice the grit now...I have been putting it in some Ald/Coconut So Delicious milk and it mixes great and tastes good and no reactions
Life is finally starting to take on a different perspective for me, hope it means I'll be ok now.
Hugs
Erica
It can't hurt Brandy! I have found that the sand has come a long ways and I don't really notice the grit now...I have been putting it in some Ald/Coconut So Delicious milk and it mixes great and tastes good and no reactions
Life is finally starting to take on a different perspective for me, hope it means I'll be ok now.
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
WAHOOOOOOO, Erica!!!!!
I am thrilled to read your update!!! Good for you for sticking with it and continuing to tweak. I think it takes a lot longer for the BMs to firm up and to find the optimal dosing than we are told.
I can feel your excitement. I felt the same way and still do. It's almost a giddy feeling, isn't it? For the first time since my diagnosis 15 years ago, I finally feel like I have consistent control over my gut. When I take the cholestyramine, I have one or two BMs a day, usually between 5 and 6 on the Bristol stool scale, but the best part is that I have all the time I need to get to the toilet. No more urgency.....no more panic when realizing I have only seconds to get to the bathroom....no more watery/yellow/green D. It truly feels like I finally have my life back.
A bonus that you may notice: since taking the cholestyramine, I find that I can eat many more of my sensitive foods. Of course, I will never eat gluten again, but I am now able to eat many more of the foods identified as problems on the MRT. Even some occasional cheese.
I am SOOO happy for you. Best wishes to others who are planning a trial. Keep us posted, please.
Love,
Polly
I am thrilled to read your update!!! Good for you for sticking with it and continuing to tweak. I think it takes a lot longer for the BMs to firm up and to find the optimal dosing than we are told.
I can feel your excitement. I felt the same way and still do. It's almost a giddy feeling, isn't it? For the first time since my diagnosis 15 years ago, I finally feel like I have consistent control over my gut. When I take the cholestyramine, I have one or two BMs a day, usually between 5 and 6 on the Bristol stool scale, but the best part is that I have all the time I need to get to the toilet. No more urgency.....no more panic when realizing I have only seconds to get to the bathroom....no more watery/yellow/green D. It truly feels like I finally have my life back.
A bonus that you may notice: since taking the cholestyramine, I find that I can eat many more of my sensitive foods. Of course, I will never eat gluten again, but I am now able to eat many more of the foods identified as problems on the MRT. Even some occasional cheese.
I am SOOO happy for you. Best wishes to others who are planning a trial. Keep us posted, please.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Erica:
Which kind do you have? Is it flavored orange? Sounds like yours mixes fairly well. I have the Sandoz packets-they are orange flavored-not awful, but certainly don't mix well into anything-always powder chunks remaining. I just mix into a couple of ounces of water. Would love to get it compounded without the sugar and flavoring, but my dr looked at me like I was nuts when I asked for that.
Lisa
Which kind do you have? Is it flavored orange? Sounds like yours mixes fairly well. I have the Sandoz packets-they are orange flavored-not awful, but certainly don't mix well into anything-always powder chunks remaining. I just mix into a couple of ounces of water. Would love to get it compounded without the sugar and flavoring, but my dr looked at me like I was nuts when I asked for that.
Lisa
Brandy,
I've been thinking about your situation. Please look very closely at any additions or changes in food (maybe different suppliers, different restaurants, someone else's cooking, etc.), ingredients, supplements, medications, (HRT), cosmetics, etc., that you may have made in the few months prior to when your symptoms began. Several times over the years I've tracked down cross-contamination as the cause of my symptoms.
Also, there's always the risk of becoming sensitive to a new protein. The only significant possibility I can see that's not included in your list of food sensitivities is eggs. Similar to a yeast sensitivity, I don't consider eggs to be as serious as the other foods in terms of lifelong risk, but they can certainly cause problems in the short term (when leaky gut is present).
One other possibility is a yeast overgrowth. Have you noticed any thrush or other signs of a possible yeast overgrowth? A Candida overgrowth will definitely cause leaky gut, and that will open the door to all sorts of food sensitivities and other problems.
I hope you'll be able to find a solution soon.
Tex
I've been thinking about your situation. Please look very closely at any additions or changes in food (maybe different suppliers, different restaurants, someone else's cooking, etc.), ingredients, supplements, medications, (HRT), cosmetics, etc., that you may have made in the few months prior to when your symptoms began. Several times over the years I've tracked down cross-contamination as the cause of my symptoms.
Also, there's always the risk of becoming sensitive to a new protein. The only significant possibility I can see that's not included in your list of food sensitivities is eggs. Similar to a yeast sensitivity, I don't consider eggs to be as serious as the other foods in terms of lifelong risk, but they can certainly cause problems in the short term (when leaky gut is present).
One other possibility is a yeast overgrowth. Have you noticed any thrush or other signs of a possible yeast overgrowth? A Candida overgrowth will definitely cause leaky gut, and that will open the door to all sorts of food sensitivities and other problems.
I hope you'll be able to find a solution soon.
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.
I am using the Regular Sandoz Sucrose Orange flavor with a 4mg scoop in a container. I really want to opt for pkts for traveling some day....I use a mini manual stirring whip to really raz up the mixture no spoon....I favor the flavor...but for anyone that doesn't like orange flavor and could deal with it in their usual milk types it would be nice to have that option.Which kind do you have? Is it flavored orange? Sounds like yours mixes fairly well. I have the Sandoz packets-they are orange flavored-not awful, but certainly don't mix well into anything-always powder chunks remaining. I just mix into a couple of ounces of water. Would love to get it compounded without the sugar and flavoring, but my dr looked at me like I was nuts when I asked for that.
Lisa
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Hi Tex,
Thanks for your thoughts. Due to your message I've switched the boyfriend over to paper plates for his sandwiches and plastic knives for his peanut butter spread on sandwiches.
I'm pretty certain my flare came on due to stress--some stressors that are probably the worst that I've ever had. Stress coupled with eating too junkie: m&ms, too many raw nuts, too many rice crackers, too many GF chips etc. I also reduced bioidentical hormones at around this time.
The good news is I've come out of the flare. The same day I started the cholestyramine I stopped the oral mag glycinate I was taking at night. In retrospect I should have stopped the oral mag glycinate months prior.
Day 1 and day 2 I took 1/2 pack (2 mg) (1-1/2 level teaspoons) cholesyramine. Day 3 and day 4 I took 1/3rd of pack (1 level teaspoon) cholestyramine.
There are 3 level teaspoons in a 4 mg pack of chlestyramine. Day 5-7 I took 1/2 level teaspoon. Last two days I've taken 1/4 level teaspoon per day.
Concurrently I stopped the oral mag glycinate. I retried the oil spray of magnesium. It causes me to itch too severely. Even the epsom salt baths caused itching. I'm now doing foot baths with epsom salt every evening and that seems to be working as I'm sleeping at night.
On the crohns forums there are a number of MCers who have taken cholestyramine for like 10 years. I think it will be a short term stint for me going by how I'm responding.
I suspect I've responded particularly well for a number of reasons. I'm still eating a lot of protein and I'm eating a narrow diet. Before I started cholestyramine I was about 4 weeks into the pepto protocol and I would get solid stool if I ate only protein during a day. If I ate anything else I would get WD. It was tough to sustain only protein.
Within 24 hours of first dose the cholestyramine really seemed to settle the mind/gut stomach churning/roiling. Within 24 hours I had solid stool.
******I SAW POLLY'S PRIOR COMMENTS ABOUT CHOLESTYRAMINE BEING PRETTY BENIGN AND PERHAPS SHOULD BE TRIED BEFORE ENTOCORT AND/OR UCERIS. HAVING BEEN ON ENTOCORT AND ALSO ON THE PEPTO PROTOCOL IN THE PAST I WOULD AGREE WITH THAT.
My results were unusually fast I suspect due to my narrow food regimen. I think Polly mentions give the cholestyramine perhaps 4-6 weeks. Discontinuing the oral mag glycinate probably came into play also.
Thanks for your thoughts. Due to your message I've switched the boyfriend over to paper plates for his sandwiches and plastic knives for his peanut butter spread on sandwiches.
I'm pretty certain my flare came on due to stress--some stressors that are probably the worst that I've ever had. Stress coupled with eating too junkie: m&ms, too many raw nuts, too many rice crackers, too many GF chips etc. I also reduced bioidentical hormones at around this time.
The good news is I've come out of the flare. The same day I started the cholestyramine I stopped the oral mag glycinate I was taking at night. In retrospect I should have stopped the oral mag glycinate months prior.
Day 1 and day 2 I took 1/2 pack (2 mg) (1-1/2 level teaspoons) cholesyramine. Day 3 and day 4 I took 1/3rd of pack (1 level teaspoon) cholestyramine.
There are 3 level teaspoons in a 4 mg pack of chlestyramine. Day 5-7 I took 1/2 level teaspoon. Last two days I've taken 1/4 level teaspoon per day.
Concurrently I stopped the oral mag glycinate. I retried the oil spray of magnesium. It causes me to itch too severely. Even the epsom salt baths caused itching. I'm now doing foot baths with epsom salt every evening and that seems to be working as I'm sleeping at night.
On the crohns forums there are a number of MCers who have taken cholestyramine for like 10 years. I think it will be a short term stint for me going by how I'm responding.
I suspect I've responded particularly well for a number of reasons. I'm still eating a lot of protein and I'm eating a narrow diet. Before I started cholestyramine I was about 4 weeks into the pepto protocol and I would get solid stool if I ate only protein during a day. If I ate anything else I would get WD. It was tough to sustain only protein.
Within 24 hours of first dose the cholestyramine really seemed to settle the mind/gut stomach churning/roiling. Within 24 hours I had solid stool.
******I SAW POLLY'S PRIOR COMMENTS ABOUT CHOLESTYRAMINE BEING PRETTY BENIGN AND PERHAPS SHOULD BE TRIED BEFORE ENTOCORT AND/OR UCERIS. HAVING BEEN ON ENTOCORT AND ALSO ON THE PEPTO PROTOCOL IN THE PAST I WOULD AGREE WITH THAT.
My results were unusually fast I suspect due to my narrow food regimen. I think Polly mentions give the cholestyramine perhaps 4-6 weeks. Discontinuing the oral mag glycinate probably came into play also.