If you really want to get your life back you are going to have to stop using Nexium, because it is almost surely the cause of your watery D. No treatment that we are aware of (including diet changes) is capable of overriding a PPI to stop the D. The PPI is going to cause D, no matter what else you do. PPIs are labeled for use for up to 2 weeks, if I recall correctly. But almost everyone who uses them becomes "hooked" because they use them for longer than 2 weeks. The problem is that within 2 weeks of use, PPIs cause a dependency in the body. After that, when someone tries to stop using them, the withdrawal causes the very symptoms that PPIs are prescribed to treat, except that the symptoms are worse than they were originally. So another innocent patient becomes "hooked".
After using a PPI for so long, weaning off is going to be very difficult, but if you truly want to get your life back, it is absolutely necessary to wean off the PPI. We have a number of members who have been in the same situation that you are in — unable to achieve remission because of taking a PPI, and they have been able to wean off the PPIs, and stop their symptoms.
Most people are able to wean off a PPI by using H2 blockers instead of a PPI. But it will probably take months before your body will completely adjust to living without a PPI because long-term use of PPIs causes semi-permanent damage to the parietal cells of the stomach that takes a long time to heal. You will probably have to take an H2 blocker at (before) each meal, because they only last for a few hours, rather than lasting all day or longer, the way that PPIs work. H2 blockers include medications such as cimetidine (Tagamet), ranitidine (Zantac), and famotidine (Pepcid).
I would dearly love to see you post that your MC is in remission. You've been having to deal with these symptoms for way too long.
Tex
More on Bile Acids (an important piece of the MC puzzle?)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My partner was on Lanzoprazole until a study came out recently (I'll look for year study and add it here) that implicates PPI's with sudden cardiac related death. She stopped it immediately and went on to the less effective Ranitadine. She would rather be alive with some problems than dead with none at all.
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
It's pretty tough to argue with that logic. I'm in total agreement.Jen wrote:She would rather be alive with some problems than dead with none at all.
PPIs have been shown to have many other issues also, not the least of which are: increasing the risk of a C. diff infection, or other bacterial infections, osteoporosis, chronic kidney disease, community acquired pneumonia, and fractures.
This may be the study that you were referring to, regarding PPIs and increase heart risk:
Chronic Use of Proton Pump Inhibitors Increases Heart Risk
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.
You know, I knew that about Nexium, but I guess I thought maybe it wouldn't affect me so much...I don't know really what I was thinking. The good thing was that Nexium I could take first thing in the morning. I can't take Zantac before meals because I have to take the cholestyramine right after a meal and I can't mix within two hours before or four hours after, which makes it much harder to use something like Zantac. But I did stop the Nexium. As of today, I don't see much improvement. I just don't know what is going on with my body anymore, period. I have my scope on Thursday, will talk to the doc then and maybe go back on Entecort...UGH~!!!! Until then, I'm going to continue the Cholestyramine. I think maybe I'm interacting with some inert ingredient, and wondering if the pill form would even work for me. Sigh. SOOO tired of dealing with this.
The effects of Nexium last for at least 3 days, so it can take a few days for the effects to wear off (and the withdrawal effects to begin).
Tex
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.
As far as I'm aware, the cholestyramine shouldn't affect your upcoming colonoscopy exam.
You're very welcome,
Tex
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.
Paging Polly...
Well, this Welchol seems to be the answer for me. Since starting it in Oct., urgency gone, yellowy liquid in the bowl gone, visible undigested food gone. The most consistently normal looking stool I've had since all this started nearly 5 years ago.
Woo-hoo is all I can say! I have not yet messed with any foods, as I did not want to rock the boat going into the holidays. The first ones I think I will try later are the ones I most frequently saw too soon/undigested, which were certain fruits and veggies. I might later try some dairy. Not soy, as an early reaction to edamame was awful, and not gluten, since I have recently seen my GI doc's notes on my case (via the GI group's online portal) and she said in them back in 2011 that she was certain I was headed for celiac in addition to the LC diagnosis if I continued with gluten.
This has been a real gift to me, and I'm glad you started the discussion about bile acids.
Well, this Welchol seems to be the answer for me. Since starting it in Oct., urgency gone, yellowy liquid in the bowl gone, visible undigested food gone. The most consistently normal looking stool I've had since all this started nearly 5 years ago.
Woo-hoo is all I can say! I have not yet messed with any foods, as I did not want to rock the boat going into the holidays. The first ones I think I will try later are the ones I most frequently saw too soon/undigested, which were certain fruits and veggies. I might later try some dairy. Not soy, as an early reaction to edamame was awful, and not gluten, since I have recently seen my GI doc's notes on my case (via the GI group's online portal) and she said in them back in 2011 that she was certain I was headed for celiac in addition to the LC diagnosis if I continued with gluten.
This has been a real gift to me, and I'm glad you started the discussion about bile acids.
Suze
MC Diagnosis; Budesinide; Cholestyramine; Ultrainflamx Plus
I was searching for 3 1/2 years for causes of my fatigue and sore abdomen. I have developed sore joints, some gum inflamation; sore eyes; and sore hips and have lower leg neuropathy. Results of colonoscopy with biopsies was MC, specifically LYmph C. Also a duodenal ulcer Vitamin D deficiency; Testosterone deficiency; enzyme deficiency and perhaps too much gall bile? The GI is treating with Budesonide and now has prescribed Sandoz Cholestyramine. I also have night sweats and oten time difficulty sleeping. With the evening dose of Cholestyramine, I couldn't absorb the sleep inducer and so may hafe only got an hour of sleep or so. Was exhausted, as I have been in the extreme for the past 3 1/2 years but more so in the past year where I can hardly stay awake more than a few hours per day. I also have heart valves that are leaking. Plus a cyst in the pancreas tail that "appears to be benign" according to doctors. Apparently, yellow in the urine which I've seen is symptomatic of problems with the liver.
I just received a packet of the expensive Ultra Inflamx Plus 360, nutritional supplement from metagenics and took my first glas off it an hour ago. Has anyone had any experience with the company and its "medical food" supplements? I did ask my GI if I could take this and he said he had no objection to it. With regard to probiotics, a physician assistant recommended Align. When I asked the GI yesterday, Feb 1, 2018 about probiotics, he said that the reviews on it were mixed with some people having worse D with it. Of late, my D has been changed with my attempt at an AIP diet and the use of anti-D generic and Vitamin D with K2 added. My energy and weakness continue very low. The stools started out as being quite soft to breaking up after the D cleared away with the Imodium type OTC.
I have looked at Paleo and AIP diets and am attempting to follow them. At the various health food stores, as I read the ingredients on almost all packaged flour, snacks, pasta, etc., I almost always find at least one ingredient that is not permitted on the diet. On-line ordering is constant and thus annoying. I shop at Trader Joes, Lassens, Sproutz, mostly.
With regard to the various Supergreens drinks and the like, there are at least some of the juices that come from night shades, even though other of the nutrient dense plant materials are contained therein. I drink some of them.
I have the enterolab kit. But I'm afraid to stop taking the enzymes for fear that the D will come back. Should I send in the sample to find out the "allergies?" - thus at least getting some further information?
Thanks, Alex F - Ca
I just received a packet of the expensive Ultra Inflamx Plus 360, nutritional supplement from metagenics and took my first glas off it an hour ago. Has anyone had any experience with the company and its "medical food" supplements? I did ask my GI if I could take this and he said he had no objection to it. With regard to probiotics, a physician assistant recommended Align. When I asked the GI yesterday, Feb 1, 2018 about probiotics, he said that the reviews on it were mixed with some people having worse D with it. Of late, my D has been changed with my attempt at an AIP diet and the use of anti-D generic and Vitamin D with K2 added. My energy and weakness continue very low. The stools started out as being quite soft to breaking up after the D cleared away with the Imodium type OTC.
I have looked at Paleo and AIP diets and am attempting to follow them. At the various health food stores, as I read the ingredients on almost all packaged flour, snacks, pasta, etc., I almost always find at least one ingredient that is not permitted on the diet. On-line ordering is constant and thus annoying. I shop at Trader Joes, Lassens, Sproutz, mostly.
With regard to the various Supergreens drinks and the like, there are at least some of the juices that come from night shades, even though other of the nutrient dense plant materials are contained therein. I drink some of them.
I have the enterolab kit. But I'm afraid to stop taking the enzymes for fear that the D will come back. Should I send in the sample to find out the "allergies?" - thus at least getting some further information?
Thanks, Alex F - Ca
AF
Hi Alex,
You have so many issues I hardly know where to start, but yes — the first order of business is to get those EnteroLab tests so that you are no longer flying blind. I don't understand what enzymes you're talking about, but they shouldn't affect the EnteroLab results.
Since you are vitamin D deficient, I'm guessing that the night sweats and difficulty sleeping are due to severe magnesium deficiency (been there, done that). That magnesium deficiency may also be affecting/causing your heart valve problems, but I hesitate to recommend magnesium because of the fact that it may affect your heart adversely if you are not deficient. Unless you have been taking a good daily magnesium supplement, you are almost surely deficient. Has your magnesium level ever been tested? I'm talking about a red blood cell (RBC) magnesium test, not the worthless serum magnesium test that doctors almost always order.
After you get the EnteroLab test results back we can decide how to proceed with the diet. Again, welcome aboard, and please feel free to ask anything.
Tex
You have so many issues I hardly know where to start, but yes — the first order of business is to get those EnteroLab tests so that you are no longer flying blind. I don't understand what enzymes you're talking about, but they shouldn't affect the EnteroLab results.
Since you are vitamin D deficient, I'm guessing that the night sweats and difficulty sleeping are due to severe magnesium deficiency (been there, done that). That magnesium deficiency may also be affecting/causing your heart valve problems, but I hesitate to recommend magnesium because of the fact that it may affect your heart adversely if you are not deficient. Unless you have been taking a good daily magnesium supplement, you are almost surely deficient. Has your magnesium level ever been tested? I'm talking about a red blood cell (RBC) magnesium test, not the worthless serum magnesium test that doctors almost always order.
After you get the EnteroLab test results back we can decide how to proceed with the diet. 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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Metagenics is a very good reputable brand, good quality ingredients and formulations.
it is a 'practitioner' only brand
reading your post this is my thoughts
- the paleo and AIP diets probably didnt work so well given you were deficient in Vit D3 - the body needs good levels of Vit D3 and magnesium to optimise healing in the body.
- this also applies to use of medications, we have observed by contributions by many here, that medications have limited scope of success if the person is low in Vit D3 and magnesium
- even though the metagenics product(s) are good quality, any item with lots of ingredients does not work so well in the early stages of healing. what we found works best for most people is
- bland low amount of ingredients paleo AIP type eating plan
- Vit D3 and magnesium supplementation ONLY at first
- after some healing time start with active B's supplements
one of the reasons that pro-biotics do not work so well for many is that quite a few of them can be high histamine / increase histamine levels in the body. this is a common issue for MC'ers - generally as key nutrients like Magnesium and B6 are key to moderating histamine levels in the body.
we do have a suggested eating plan in the Guidelines to recovery section of this forum.
if starting with the sandoz cholestryamine, please ensure you are doing good Vit D3 and magnesium supplementation and that you take the cholestryamine away from eating and supplements intake.
hope this helps
it is a 'practitioner' only brand
reading your post this is my thoughts
- the paleo and AIP diets probably didnt work so well given you were deficient in Vit D3 - the body needs good levels of Vit D3 and magnesium to optimise healing in the body.
- this also applies to use of medications, we have observed by contributions by many here, that medications have limited scope of success if the person is low in Vit D3 and magnesium
- even though the metagenics product(s) are good quality, any item with lots of ingredients does not work so well in the early stages of healing. what we found works best for most people is
- bland low amount of ingredients paleo AIP type eating plan
- Vit D3 and magnesium supplementation ONLY at first
- after some healing time start with active B's supplements
one of the reasons that pro-biotics do not work so well for many is that quite a few of them can be high histamine / increase histamine levels in the body. this is a common issue for MC'ers - generally as key nutrients like Magnesium and B6 are key to moderating histamine levels in the body.
we do have a suggested eating plan in the Guidelines to recovery section of this forum.
if starting with the sandoz cholestryamine, please ensure you are doing good Vit D3 and magnesium supplementation and that you take the cholestryamine away from eating and supplements intake.
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
-
rcchild@gpcom.net
- Little Blue Penguin
- Posts: 44
- Joined: Sun May 26, 2019 2:09 pm
- Location: Nebraska
Edit: After posting these questions, I found an updated thread on cholestyramine, which has been very helpful.
Yesterday I finally called my GP and asked her to prescribe colestryramine and specified the Sandoz brand with sucrose. She was happy to do that for me. Will pick it up from the pharmacy later this afternoon. Then last night I found this thread! What great info on the subject.
I would love to hear from some of you who are using cholestryramine now (most of the posts on the thread are about 4 years old.) Is it continuing to be a good solution? Are you still using it?
There was some discussion about whether it would reduce the inflammation in the colon or just bind with the bile and reduce the D. What are your thoughts on that 4 years later? I'm really hoping to have good luck with this, but was hoping to reduce inflammation, at the same time as reducing D.
I'm on a very limited diet and doing much better than I was 7 months ago, but ready to try other options. I'll continue the limited diet, but try the cholestryramine. If it does not help, I will do the Pepto protocol. It will be hard to find a Pepto product that I can tolerate. Anyway I'm excited to try the cholestryramine and, after reading the above posts, I'm hopeful!
Carol C
Yesterday I finally called my GP and asked her to prescribe colestryramine and specified the Sandoz brand with sucrose. She was happy to do that for me. Will pick it up from the pharmacy later this afternoon. Then last night I found this thread! What great info on the subject.
I would love to hear from some of you who are using cholestryramine now (most of the posts on the thread are about 4 years old.) Is it continuing to be a good solution? Are you still using it?
There was some discussion about whether it would reduce the inflammation in the colon or just bind with the bile and reduce the D. What are your thoughts on that 4 years later? I'm really hoping to have good luck with this, but was hoping to reduce inflammation, at the same time as reducing D.
I'm on a very limited diet and doing much better than I was 7 months ago, but ready to try other options. I'll continue the limited diet, but try the cholestryramine. If it does not help, I will do the Pepto protocol. It will be hard to find a Pepto product that I can tolerate. Anyway I'm excited to try the cholestryramine and, after reading the above posts, I'm hopeful!
Carol C
Cholestyramine dosing
Carol-
I have been taking cholestyramine for 3 years now. Varying doses, am currently (and for past 3 months..) taking 8 packets a day!!! That's what it takes for me!!! And I now weight 120#, bottomed out at 100# 2 years ago. I have to think the inflammation is reduced by reducing the bile acid burden in my gut!!! I seriously ate like 4 ingredients for a good year and a half, tried Entocort twice and other prescribed drugs. Entocort never did much for me, pepto helped but not when I was completely out of control.
I never would have figured I had bile acid issues. Diarrhea is an issue in my mom's family, Swedish side. Not something you talk about in mixed company. My mom now takes 4 packets a day...
I am someone who actually thought I wouldn't be alive much longer 2 years ago. Seriously. I'm not being dramatic. I stopped cholestyramine 2x and the wheels came off the train completely. I had to learn the hard way that Par brand didn't work, I have to have Sandoz. Maybe there are other brands that work, but being a widowed gal that has to work to pay the bills...I can't experiment on myself find out.
I have my life back people. I only take the cholestyramine and fat soluble vitamins (D, E, A, K). Plus my magnesium lotion daily. If I stop that stuff I get anxious/twitchy and my sleep goes out the window. I sleep well nowdays!! I work full time, have gotten back to riding my bicycle and joined and gym last week and have started lifting/working out again. I pretty much eat what I want-I tested out with Enterolab as reacting to EVERYTHING!!!. Everything was a 2, rice was a 3. Go figure. Believe me I was way gun shy trying out new foods...but I was in New Orleans with friends in September and just went for it...and I'm good. But it takes 8 packets a day. I don't do crazy gluten, but I do it. I drink beer, I drink wine, I have a margarita every now and again (I live in Phoenix..).
You have nothing to lose if everything else isn't working for you. I didn't ever get good control on a restricted diet. Entocort didn't work-might as well have been doing M &M's. And I didn't cheat people...I had to work and get out of the house!! I have carried a hospital barf bucket in my car for years, and have used it alot over the years. I have stopped my car MANY, MANY TIMES to poop behind a bush on the side of a road including interstates!!! Riding my bike, I never every bush, porta potty and tree in the Denver/Colorado Springs metro areas!!! Really, at this point I have no pride!! We all just want to have a life!!
Good luck to you, just keep experimenting. I don't check in much since my life is so much better...but I do check in as I want someone else to get back to life..
Laine
1
I have been taking cholestyramine for 3 years now. Varying doses, am currently (and for past 3 months..) taking 8 packets a day!!! That's what it takes for me!!! And I now weight 120#, bottomed out at 100# 2 years ago. I have to think the inflammation is reduced by reducing the bile acid burden in my gut!!! I seriously ate like 4 ingredients for a good year and a half, tried Entocort twice and other prescribed drugs. Entocort never did much for me, pepto helped but not when I was completely out of control.
I never would have figured I had bile acid issues. Diarrhea is an issue in my mom's family, Swedish side. Not something you talk about in mixed company. My mom now takes 4 packets a day...
I am someone who actually thought I wouldn't be alive much longer 2 years ago. Seriously. I'm not being dramatic. I stopped cholestyramine 2x and the wheels came off the train completely. I had to learn the hard way that Par brand didn't work, I have to have Sandoz. Maybe there are other brands that work, but being a widowed gal that has to work to pay the bills...I can't experiment on myself find out.
I have my life back people. I only take the cholestyramine and fat soluble vitamins (D, E, A, K). Plus my magnesium lotion daily. If I stop that stuff I get anxious/twitchy and my sleep goes out the window. I sleep well nowdays!! I work full time, have gotten back to riding my bicycle and joined and gym last week and have started lifting/working out again. I pretty much eat what I want-I tested out with Enterolab as reacting to EVERYTHING!!!. Everything was a 2, rice was a 3. Go figure. Believe me I was way gun shy trying out new foods...but I was in New Orleans with friends in September and just went for it...and I'm good. But it takes 8 packets a day. I don't do crazy gluten, but I do it. I drink beer, I drink wine, I have a margarita every now and again (I live in Phoenix..).
You have nothing to lose if everything else isn't working for you. I didn't ever get good control on a restricted diet. Entocort didn't work-might as well have been doing M &M's. And I didn't cheat people...I had to work and get out of the house!! I have carried a hospital barf bucket in my car for years, and have used it alot over the years. I have stopped my car MANY, MANY TIMES to poop behind a bush on the side of a road including interstates!!! Riding my bike, I never every bush, porta potty and tree in the Denver/Colorado Springs metro areas!!! Really, at this point I have no pride!! We all just want to have a life!!
Good luck to you, just keep experimenting. I don't check in much since my life is so much better...but I do check in as I want someone else to get back to life..
Laine
1
"Do what you can, with what you have, where you are"-Teddy Roosevelt
-
tiffanyvaughn
- Posts: 13
- Joined: Mon Oct 22, 2018 7:17 pm
Laine,
Thank you for that update and info! I can totally relate as a runner who knows every bush, tree, hidden side stretch(or not so hidden!) to pull off at!! I'm still in the thick of all that and working hard to use very restricted diet to bring remission, but I am open to the cholestyramine. And good to know from you, how much it took/takes. I saw your comments before recently in response to cholestyramine topic and just wanted to thank you for checking in and posting, even though you are in good shape now. It's hopeful and inspiring!
Tiffany
Thank you for that update and info! I can totally relate as a runner who knows every bush, tree, hidden side stretch(or not so hidden!) to pull off at!! I'm still in the thick of all that and working hard to use very restricted diet to bring remission, but I am open to the cholestyramine. And good to know from you, how much it took/takes. I saw your comments before recently in response to cholestyramine topic and just wanted to thank you for checking in and posting, even though you are in good shape now. It's hopeful and inspiring!
Tiffany
Tiffany A. Vaughn