Hi everyone,
I guess I'm a foul weather friend in that I usually don't post unless I have a problem. I apologize! I'm spoiled because my remission of 16 years has been so smooth. I rarely get flares, and when I do they are either very short- lived or due to very obvious triggers.
I've had this last flare for 3 weeks, alternating between D and C. This is very unusual for me, and I can't seem to identify a possible trigger. It started 2 days after I returned from a short trip to visit family in Mn. (I live in Ohio). I came down with a slight cold while there and took a couple Walgreen's gf benadryl first thing when I got home. 2 days later the D started. Took 6 Pepto's, started bland diet, took 1 Immodium, then got C for 4-5 days.
Then back to a couple small normans and
D in one day. Repeated same treatment, except no Immodium. Went on bland diet. C returned for 4 days. Then same progression to D again. Repeated Peptos and 1 Immodium last night (so I could sleep.)
I'm trying to be very succinct for your benefit, and also because this keyboard is not good and keeps doing things I don't want.
Any thoughts, Tex, Peggy? Can one become more sensitive with age (I'm now almost 71.) Otherwise I feel very well, for the most part. I rarely get colds, flu, etc. I have a few conditions that I take meds for, but nothing new.
I wish everyone the best of health and peace.
Love,
Alice
unusual flare
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
!!
Hi Alice,
It's good to see a post from you again, although I'm sorry that you needed to write one. Alternating D and C was my pattern of reactions back before I changed my diet. This can be a complex disease and it's sometimes surprising what can cause a reaction. The first thing I would look at would be my meds. Have you made any changes lately? And if you regularly take any pills, has your pharmacy made any substitutions lately? Sometimes a change of manufacturer can cause a flare.
If you can't find a problem with your meds or your diet, you may have developed bile acid malabsorption (BAM). This can apparently happen occasionally for no obvious reason. Bile acid sequestrants are relatively safe to take (their only caveat is that you have to take them apart from other meds or vitamin supplements, because they will make them unavailable for absorption also). They're available by subscription only and it appears that almost all of us require the Regular Sandoz formulation. The Lite version rarely works and generic versions rarely work for us ("us" referring to MC patients). It may take a while to find the right dose — that has to be determined by trial and error. Here are a couple of threads describing how Polly "rediscovered" this old remedy.
A New Way to Look at MC
More on Bile Acids (an important piece of the MC puzzle?)
To read my insight into this phenomenon, here's a link to a short article about why I think it happens:
Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol
If you decide to try this, please keep us posted.
Love,
Tex
It's good to see a post from you again, although I'm sorry that you needed to write one. Alternating D and C was my pattern of reactions back before I changed my diet. This can be a complex disease and it's sometimes surprising what can cause a reaction. The first thing I would look at would be my meds. Have you made any changes lately? And if you regularly take any pills, has your pharmacy made any substitutions lately? Sometimes a change of manufacturer can cause a flare.
If you can't find a problem with your meds or your diet, you may have developed bile acid malabsorption (BAM). This can apparently happen occasionally for no obvious reason. Bile acid sequestrants are relatively safe to take (their only caveat is that you have to take them apart from other meds or vitamin supplements, because they will make them unavailable for absorption also). They're available by subscription only and it appears that almost all of us require the Regular Sandoz formulation. The Lite version rarely works and generic versions rarely work for us ("us" referring to MC patients). It may take a while to find the right dose — that has to be determined by trial and error. Here are a couple of threads describing how Polly "rediscovered" this old remedy.
A New Way to Look at MC
More on Bile Acids (an important piece of the MC puzzle?)
To read my insight into this phenomenon, here's a link to a short article about why I think it happens:
Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol
If you decide to try this, please keep us posted.
Love,
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.
Hi Tex,
I hope you are well, and thanks so much for your reply. I read the 3 links that you suggested and found them very interesting. I actually tried Questran back when I first got
Diagnosed. It didn't help then, but I suppose that doesn't mean it wouldn't help now.
I checked all my meds and there was no change there. I was thinking maybe I'll try the treatment that put me into remission in 2000: pepto for 8 weeks. Also, a couple years ago Polly suggested eliminating dairy if my flare didn't clear up. I never had to try it then, but maybe now I should. Dairy has ever bothered me, but both my mother and my sister were (are) lactose intolerant. I drink only almond milk, but I was eating ice cream, yogurt, cheese and butter.
Thanks again for keep the board alive and well!
Alice
I hope you are well, and thanks so much for your reply. I read the 3 links that you suggested and found them very interesting. I actually tried Questran back when I first got
Diagnosed. It didn't help then, but I suppose that doesn't mean it wouldn't help now.
I checked all my meds and there was no change there. I was thinking maybe I'll try the treatment that put me into remission in 2000: pepto for 8 weeks. Also, a couple years ago Polly suggested eliminating dairy if my flare didn't clear up. I never had to try it then, but maybe now I should. Dairy has ever bothered me, but both my mother and my sister were (are) lactose intolerant. I drink only almond milk, but I was eating ice cream, yogurt, cheese and butter.
Thanks again for keep the board alive and well!
Alice
Alice,
If you are not now avoiding dairy, that may be your problem. Everyone becomes lactose intolerant when they have intestinal inflammation. Everyone. Even if their inflammation is due to a virus such as the flu. The lactose intolerance will fade away after the inflammation is gone, but as long as our guts are inflamed, they are unable to produce normal amounts of the lactase enzyme, so we are lactose intolerant.
Tex
If you are not now avoiding dairy, that may be your problem. Everyone becomes lactose intolerant when they have intestinal inflammation. Everyone. Even if their inflammation is due to a virus such as the flu. The lactose intolerance will fade away after the inflammation is gone, but as long as our guts are inflamed, they are unable to produce normal amounts of the lactase enzyme, so we are lactose intolerant.
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.
-
JulieHaggy
- Little Blue Penguin
- Posts: 37
- Joined: Thu Aug 24, 2017 7:31 am
cholestryamine
I hope you don't mind if I jump into your conversation. Tex, I was very interested in your comment about the Lite Sandoz not working well. I tried that last week and had more D than normal. I didn't realize there is a regular powder. What do you suppose makes the regular work and not the lite? I think I will ask my doc to order the regular and give it a try.
As always, I learn something new every time I surf this forum!!
Julie
As always, I learn something new every time I surf this forum!!
Julie
-
JulieHaggy
- Little Blue Penguin
- Posts: 37
- Joined: Thu Aug 24, 2017 7:31 am
p.s.
I no longer have a gall bladder so does that mean more bile is likely to make it into the intestines?
Julie
Julie
Hi Julie,
If I recall correctly, the problem with the Lite version (at used it used to be the problem) is that it contained lactose. It might have been some other ingredient, but anyway, it had different ingredients than the regular version and that seemed to be the problem.
If you no longer have a gallbladder that doesn't necessarily mean that your liver will produce more bile, but without a gallbladder, the bile will dribble into the common bile duct and into the duodenum whenever it is produced, so it can show up in the small intestine at the wrong time (like when you get hungry, rather than after you've eaten). This often (at least initially) causes D, but the digestive system of some gallbladder surgery patients manage to adjust to it after a few months. Some patients continue to have D.
The article at the following link explains how it should work (normally) and what happens when BAM develops:
Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol
I hope this is helpful.
Tex
If I recall correctly, the problem with the Lite version (at used it used to be the problem) is that it contained lactose. It might have been some other ingredient, but anyway, it had different ingredients than the regular version and that seemed to be the problem.
If you no longer have a gallbladder that doesn't necessarily mean that your liver will produce more bile, but without a gallbladder, the bile will dribble into the common bile duct and into the duodenum whenever it is produced, so it can show up in the small intestine at the wrong time (like when you get hungry, rather than after you've eaten). This often (at least initially) causes D, but the digestive system of some gallbladder surgery patients manage to adjust to it after a few months. Some patients continue to have D.
The article at the following link explains how it should work (normally) and what happens when BAM develops:
Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol
I hope this is helpful.
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.
-
JulieHaggy
- Little Blue Penguin
- Posts: 37
- Joined: Thu Aug 24, 2017 7:31 am
cholestryamine
It has fructose in it so maybe that is the culprit...
Thanks for your help, Tex
Alice...Good luck to you in getting back into remission. It's reassuring to know that people can actually achieve remission!
Julie
Thanks for your help, Tex
Alice...Good luck to you in getting back into remission. It's reassuring to know that people can actually achieve remission!
Julie
Tex, thanks for the info about lactose intolerance. I didn't know that. My gut feels less inflamed than last week.
Babes, (this stupid keyboard won't let me type your correct name!?
I do take magnesium, but maybe not enough. What dosage is needed?
I do feel like something of a wimp, having been lucky enough to achieve R for so long. Now a little (relatively) flare
Has me stumped. I know many, if not most, of you have had a much more difficult time.
Yes, remission is possible. To stay there, I've been very strict about being gf for 17 years.
Much easier now than it was in 2000, when nobody had even
heard the word "gluten"!
Alice
Babes, (this stupid keyboard won't let me type your correct name!?
I do take magnesium, but maybe not enough. What dosage is needed?
I do feel like something of a wimp, having been lucky enough to achieve R for so long. Now a little (relatively) flare
Has me stumped. I know many, if not most, of you have had a much more difficult time.
Yes, remission is possible. To stay there, I've been very strict about being gf for 17 years.
Much easier now than it was in 2000, when nobody had even
heard the word "gluten"!
Alice
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Magnesium dosage
- check the small print on the label of your oral magnesium product to double check the 'Essential Magnesium' dosage
daily RDA is about 350-400mg ELEMENTAL magnesium per day.
if you are deficient then you will need more than 400mg elemental magnesium per day
a good way to increase daily intake without causing any D issues is to do epsom salt foot soaks or use topical magnesium oil.
- check the small print on the label of your oral magnesium product to double check the 'Essential Magnesium' dosage
daily RDA is about 350-400mg ELEMENTAL magnesium per day.
if you are deficient then you will need more than 400mg elemental magnesium per day
a good way to increase daily intake without causing any D issues is to do epsom salt foot soaks or use topical magnesium oil.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
If you are taking calcium then you will need ADDITIONAL magnesium
you will need daily RDA of magnesium PLUS magnesium at same amount of the calcium dosage as a minimum.
(the body uses magnesium to regulate calcium)
two reason why the blood test for magnesium is not entirely accurate:-
if you had magnesium on the day of the test, this would skew results;
also - the normal ranges are based on the fact that majority of the population is magnesium deficient.
(Dr Dean who is a guru on magnesium deficiency has done extensive research and written articles about this)
you will need daily RDA of magnesium PLUS magnesium at same amount of the calcium dosage as a minimum.
(the body uses magnesium to regulate calcium)
two reason why the blood test for magnesium is not entirely accurate:-
if you had magnesium on the day of the test, this would skew results;
also - the normal ranges are based on the fact that majority of the population is magnesium deficient.
(Dr Dean who is a guru on magnesium deficiency has done extensive research and written articles about this)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
ALICE!!!!!
So good to hear from you, my old buddy! Sorry to hear about the flare. The advice you have gotten so far is great. Don't forget, you and I are true pioneers here......together we have over 30 years of experience with MC. So we are still charting the course with the natural history and longterm experience of this disease.
Tex, thanks for throwing BAM into the loop.....it is diagnosed far too infrequently, IMHO. In Alice's case, I am thinking it may not work, given that her symptoms seem to be C-dominant. I think it works best in cases of constant D symptoms. I like your theory about the virus/lactose issue, so I do think it would be wise to cut out dairy until all is well-resolved.
Alice, could a change in diet during your visit have contributed? Have you added in any new food or personal care products? As an aside, I am currently on a kick to eat organic/non-GMO foods as possible. I have come to believe that it may be the chemicals (Roundup, etc.) put on the crops that have been major contributers to the huge increase in GI disorders now being diagnosed; for example, millennials with colon and liver cancer, cancers that previously were rarely diagnosed before age 50. Saw my GI doc recently and she was talking about this - mentioned a huge increase in eosinophilic esosophagitis, which she never used to see. No one knows the cause but food sensitivities are suspected. Is also seeing actual gluten ANAPHYLACTIC reactions for the first time.
Re cholestyramine, my experience is that the Sandoz generic (Questran was the original brand name) works best for me. The Par generic did not work at all. The reason I can't do "lite" versions is because I am highly sensitive to any and all "phony" sugars.
Anyway, good luck. It sounds as if things are calming down. Please keep us posted, and feel free to PM me if you wish to chat further.
Love,
Polly
So good to hear from you, my old buddy! Sorry to hear about the flare. The advice you have gotten so far is great. Don't forget, you and I are true pioneers here......together we have over 30 years of experience with MC. So we are still charting the course with the natural history and longterm experience of this disease.
Tex, thanks for throwing BAM into the loop.....it is diagnosed far too infrequently, IMHO. In Alice's case, I am thinking it may not work, given that her symptoms seem to be C-dominant. I think it works best in cases of constant D symptoms. I like your theory about the virus/lactose issue, so I do think it would be wise to cut out dairy until all is well-resolved.
Alice, could a change in diet during your visit have contributed? Have you added in any new food or personal care products? As an aside, I am currently on a kick to eat organic/non-GMO foods as possible. I have come to believe that it may be the chemicals (Roundup, etc.) put on the crops that have been major contributers to the huge increase in GI disorders now being diagnosed; for example, millennials with colon and liver cancer, cancers that previously were rarely diagnosed before age 50. Saw my GI doc recently and she was talking about this - mentioned a huge increase in eosinophilic esosophagitis, which she never used to see. No one knows the cause but food sensitivities are suspected. Is also seeing actual gluten ANAPHYLACTIC reactions for the first time.
Re cholestyramine, my experience is that the Sandoz generic (Questran was the original brand name) works best for me. The Par generic did not work at all. The reason I can't do "lite" versions is because I am highly sensitive to any and all "phony" sugars.
Anyway, good luck. It sounds as if things are calming down. Please keep us posted, and feel free to PM me if you wish to chat further.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.