Hello folks-
Long time, no see. Haven't posted in years. Had things sort of under control for years being gf/df/sf. Sort of under control...enough to be functional in the world.
Well, my world exploded in January and my husband died in March after 2 vascular surgeries starting in January. Of course my guts went into flare overdrive at that point..could see that one coming since I only had fair+ control anyway. Always figured I would do more Enterolab testing at some point.
Couldnt get things going right by cutting diet way back...up/down for a few months until it got real bad in July. I work in a hospital and got tested for c diff just to make sure I didn't have that going on...it was negative.
Got more Enterolab testing done which showed everything tested was in the 2+ category with rice in the 3+ category...super duper. So basically I've been living on turkey, lamb and sweet potatoes, overcooked squash/zucchini/carrots and eggs (eggs were ok the first Enterolab go around..). Up/down and had to do the pepto thing for about 5 weeks again mixed with immodium.
Got PCP to let me try LDN....been taking that for about 2 months at 3mg/day with no noticeable improvement. Don't really think that entocort did much for me the first and only time I tried it..so after checking in with y'all I decided to try the cholestyramine thing.
Picked up the prescription and took first 4gr packet tonight. Seems like most people start with 2 packets a day?? That can be negotiated I think. I was on a website that said I shouldn't take immodium with it..it this true?? I've been taking pepto and immodium again the past few days to try and get some sort of control here.
Polly or anyone know about this. I've been trying to branch out with elk, fish, shrimp, etc. but hard to tell what is settling well with me at this point. Heck, turkey could be bad for all I know as I don't think I do have a grasp on what are my SAFE FOODS now. I thought the same as everyone else around here until I got that further testing done. Rice...really?? I was living on that and almond milk...no more.
Thanks for listening guys-
HockeyMom
Cholestyramine\ and immodium
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Cholestyramine\ and immodium
"Do what you can, with what you have, where you are"-Teddy Roosevelt
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sorry that you have had a rough time flare wise after the events etc...
(and sympathies for the loss of your husband)
during this period have you been taking any Vit D3 and magnesium?
what we have found is that medications for MC can have limited scope of success if you are deficient in Vit D3 and magnesium.
and periods of ongoing stress can deplete Vit D3 and magnesium levels quickly.
and just to check - have you started any new medications in the past 9 months?
have you had any major changes with hormones etc?
I would start with 1 packet of the cholestryamine, you need to have this a few hours away from any other medications and supplements.
I havent seen anything about why you cant take immodium with it.
hope this helps...
some important info about magnesium:
- Most people have magnesium deficiency, - There are many reasons why magnesium deficiency occurs
Magnesium is crucial for a multitude of reasons (and there are many posts that discuss this)
Daily requirement for Magnesium is 300-400mg ELEMENTAL** Magnesium per day.
This requirement can be higher for those with medical conditions, certain medication usage, excess of toxins etc.
When resolving a magnesium deficiency it can take at least 6 weeks of high dose (ie 600mg Elemental Magnesium per day or more) to resolve a deficiency. if the deficiency is moderate and the daily usage is high, it can take a few months to resolve deficiency.
ELEMENTAL** Magnesium
it is important to read the small print on magnesium products to check, a) how many tablets or capsules are needed for that dosage, many products are two tablets for the dosage and b) how much Elemental Magnesium you are getting per dose
Like many things in life, you get what you pay for, if you buy cheaper type product, you will not get optimal benefit.
To minimise gut issues when using oral Magnesium, spread the dosage throughout the day.
these are the MC friendly magnesium products -
Oral - Chelated Magnesium Glycinate (Doctors Best brand for USA members)
Topical - Ancient Minerals Magnesium Oil and Lotion (Amazon) (USA Members)
Liquid - Re Mag (rnA Reset.com)
(and sympathies for the loss of your husband)
during this period have you been taking any Vit D3 and magnesium?
what we have found is that medications for MC can have limited scope of success if you are deficient in Vit D3 and magnesium.
and periods of ongoing stress can deplete Vit D3 and magnesium levels quickly.
and just to check - have you started any new medications in the past 9 months?
have you had any major changes with hormones etc?
I would start with 1 packet of the cholestryamine, you need to have this a few hours away from any other medications and supplements.
I havent seen anything about why you cant take immodium with it.
hope this helps...
some important info about magnesium:
- Most people have magnesium deficiency, - There are many reasons why magnesium deficiency occurs
Magnesium is crucial for a multitude of reasons (and there are many posts that discuss this)
Daily requirement for Magnesium is 300-400mg ELEMENTAL** Magnesium per day.
This requirement can be higher for those with medical conditions, certain medication usage, excess of toxins etc.
When resolving a magnesium deficiency it can take at least 6 weeks of high dose (ie 600mg Elemental Magnesium per day or more) to resolve a deficiency. if the deficiency is moderate and the daily usage is high, it can take a few months to resolve deficiency.
ELEMENTAL** Magnesium
it is important to read the small print on magnesium products to check, a) how many tablets or capsules are needed for that dosage, many products are two tablets for the dosage and b) how much Elemental Magnesium you are getting per dose
Like many things in life, you get what you pay for, if you buy cheaper type product, you will not get optimal benefit.
To minimise gut issues when using oral Magnesium, spread the dosage throughout the day.
these are the MC friendly magnesium products -
Oral - Chelated Magnesium Glycinate (Doctors Best brand for USA members)
Topical - Ancient Minerals Magnesium Oil and Lotion (Amazon) (USA Members)
Liquid - Re Mag (rnA Reset.com)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hello HockeyMom,
I also want to add my sincere sympathy for your loss. How devastating for you, and it's totally understandable that your body should go into big reactions at such a time.
Although I'm a newbie here, I wanted to share with you that I'm also one of those who is super sensitive and has very few safe foods. I, too, cannot eat rice, corn, oats, almonds, coconut, chicken, eggs, and so many things one considers a "safe, bland diet"! I've been living on lamb, turkey, all kinds of fish, sweet potatoes, artichoke hearts, nut butters, Enjoy Life chocolate chips for my "treat" and bone broth made from the lamb bones, and I've gotten most of my gut mc symptoms under pretty good control with diet alone.
If you want to look up my EnteroLab results, they're posted in the Forum Index under that category. If you look, you may take heart to know that others can be so full of inflammation too! Stress will definitely do that! And there's no place to go but "up" from there! I personally haven't tried the Cholestyramine yet, but have gotten a prescription filled for it. In my case, I decided my magnesium deficiency was the first big issue I wanted to fix, and didn't want to worry about the timing of the Cholestyramine, etc. That said, the Cholestyramine has been, as you've read, a wonderful choice for many here (who were much further along in their healing than I am now).
Wishing you healing and gentleness in all aspects of your life, and it's good to meet you, albeit under these conditions.
Hugs,
~ Holly
I also want to add my sincere sympathy for your loss. How devastating for you, and it's totally understandable that your body should go into big reactions at such a time.
Although I'm a newbie here, I wanted to share with you that I'm also one of those who is super sensitive and has very few safe foods. I, too, cannot eat rice, corn, oats, almonds, coconut, chicken, eggs, and so many things one considers a "safe, bland diet"! I've been living on lamb, turkey, all kinds of fish, sweet potatoes, artichoke hearts, nut butters, Enjoy Life chocolate chips for my "treat" and bone broth made from the lamb bones, and I've gotten most of my gut mc symptoms under pretty good control with diet alone.
If you want to look up my EnteroLab results, they're posted in the Forum Index under that category. If you look, you may take heart to know that others can be so full of inflammation too! Stress will definitely do that! And there's no place to go but "up" from there! I personally haven't tried the Cholestyramine yet, but have gotten a prescription filled for it. In my case, I decided my magnesium deficiency was the first big issue I wanted to fix, and didn't want to worry about the timing of the Cholestyramine, etc. That said, the Cholestyramine has been, as you've read, a wonderful choice for many here (who were much further along in their healing than I am now).
Wishing you healing and gentleness in all aspects of your life, and it's good to meet you, albeit under these conditions.
Hugs,
~ 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!"
Hi HockeyMom,
I'm very sorry for your loss, and also sorry that you're now having to deal with a persistent MC flare. The only known issue with taking Imodium concurrent with cholestyramine is that cholestyramine will limit the effectiveness of the Imodium (by sequestering it) if the two medications are taken together or within a few hours of each other. As Gabes mentioned, to prevent deactivating part of the Imodium you would need to take it at least 2 hours before taking the cholestyramine or more than 4 hours after taking cholestyramine.
But that restriction applies to virtually any and all oral medications and supplements taken while cholestyramine is being used. Other than that, there are no known drug interactions for Imodium. It's one of the safest (least risk of side effects or interactions) medications available.
Good luck with your recovery,
Tex
I'm very sorry for your loss, and also sorry that you're now having to deal with a persistent MC flare. The only known issue with taking Imodium concurrent with cholestyramine is that cholestyramine will limit the effectiveness of the Imodium (by sequestering it) if the two medications are taken together or within a few hours of each other. As Gabes mentioned, to prevent deactivating part of the Imodium you would need to take it at least 2 hours before taking the cholestyramine or more than 4 hours after taking cholestyramine.
But that restriction applies to virtually any and all oral medications and supplements taken while cholestyramine is being used. Other than that, there are no known drug interactions for Imodium. It's one of the safest (least risk of side effects or interactions) medications available.
Good luck with your recovery,
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.
HockeyMom,
When I started cholestyramine a year ago, I started with 2 packets a day and saw results within a week. I have since decreased my dose, but still find it helpful to take it in the morning at breakfast and in the evening either before or after dinner. I take my supplements starting 4 hours after my first dose of cholestyramine and end them 1-2 hours before my evening dose. I also take a thyroid medication about 2 hours before my morning dose of cholestyramine. For me taking the cholestyramine has greatly reduced my MC symptoms. Hope this helps.
When I started cholestyramine a year ago, I started with 2 packets a day and saw results within a week. I have since decreased my dose, but still find it helpful to take it in the morning at breakfast and in the evening either before or after dinner. I take my supplements starting 4 hours after my first dose of cholestyramine and end them 1-2 hours before my evening dose. I also take a thyroid medication about 2 hours before my morning dose of cholestyramine. For me taking the cholestyramine has greatly reduced my MC symptoms. Hope this helps.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Thanks guys-
Gabes...Ive been checking in for years and keeping up on all the talk here..in addition to sort of learning from one of my very progressive docs at the hospital who is very into nutrition.
I've been taking Vit D for years as I really think I was deficient years ago...got that checked a few times in the past few years and have been in the good zone. Currently take 5,000 a day. Have been taking Magnesium glycinate for a few years now....200 a day orally and then do a bath a few times a week and oil spray too. Could probably up the oral by taking another pill later in the day but have always been wary of the oral stuff and diarrhea. I also take a B complex and a zinc melty every day. That's it for supplements. No prescription stuff.
I'm sure the stress hasn't helped anything gut wise. Over the years I actually have been great for long stretches at a time then sketchy...no apparent reason. Again...strict gf/sf/df as late hubby was pretty wicked celiac. I still have quite a bit of elk that husband shot...will need to try that again as it seemed to be alright a month or two ago. Lamb is ok it seems also. I can deal with dietary restrictions..my coworkers kid me that I eat like a Plains Indian anyway (way paleo eh??). I am missing rice like crazy though.
Anyway..thanks again guys. I will go with the one packet of Cholestyramine for a few more days to make sure no funkiness is going on then may bump up to 2 packets a day. I will tell you all that just having taken the 2 packets so far I seem to be way less gurgly today than I have been all this week.
I'm actually sort of amazed I've only missed one day of work with this whole deal. When you are wondering about where you are going with your life, trying to get legal and financial matters wrapped up, dealing with crazy family members...well you get the idea. I've come to the realization that I can't afford this townhome so I've begun to clean things out around here to have less stuff to haul around when I do sell it.
Tex-thanks for the information regarding timing, supplements, etc. I don't have any problem hauling stuff around in my pocket to take at lunch time at work. Since I'm on no prescription meds it's a little easier I think.
Hockey Mom
Gabes...Ive been checking in for years and keeping up on all the talk here..in addition to sort of learning from one of my very progressive docs at the hospital who is very into nutrition.
I've been taking Vit D for years as I really think I was deficient years ago...got that checked a few times in the past few years and have been in the good zone. Currently take 5,000 a day. Have been taking Magnesium glycinate for a few years now....200 a day orally and then do a bath a few times a week and oil spray too. Could probably up the oral by taking another pill later in the day but have always been wary of the oral stuff and diarrhea. I also take a B complex and a zinc melty every day. That's it for supplements. No prescription stuff.
I'm sure the stress hasn't helped anything gut wise. Over the years I actually have been great for long stretches at a time then sketchy...no apparent reason. Again...strict gf/sf/df as late hubby was pretty wicked celiac. I still have quite a bit of elk that husband shot...will need to try that again as it seemed to be alright a month or two ago. Lamb is ok it seems also. I can deal with dietary restrictions..my coworkers kid me that I eat like a Plains Indian anyway (way paleo eh??). I am missing rice like crazy though.
Anyway..thanks again guys. I will go with the one packet of Cholestyramine for a few more days to make sure no funkiness is going on then may bump up to 2 packets a day. I will tell you all that just having taken the 2 packets so far I seem to be way less gurgly today than I have been all this week.
I'm actually sort of amazed I've only missed one day of work with this whole deal. When you are wondering about where you are going with your life, trying to get legal and financial matters wrapped up, dealing with crazy family members...well you get the idea. I've come to the realization that I can't afford this townhome so I've begun to clean things out around here to have less stuff to haul around when I do sell it.
Tex-thanks for the information regarding timing, supplements, etc. I don't have any problem hauling stuff around in my pocket to take at lunch time at work. Since I'm on no prescription meds it's a little easier I think.
Hockey Mom
"Do what you can, with what you have, where you are"-Teddy Roosevelt