Hi All,
I've been at this for three years now. With a course of Entocort and LOTS of learning, things improved. Last May, I moved backwards with an increase in diarrhea but the diarrhea was brown, now water.
This January, I decided to concoct my own recipe for bread and that recipe included sorghum flour, something I had not tried before. I had a serving in the evening and again the next morning. After the two servings, I started having explosive diarrhea consisting of water and chewed food. I reverted to just a few foods but the WD continued.
The short story is that I began using cholestyramine and the quality of my BMs improved almost immediately. My BMs now range from brown diarrhea that sinks (improvement) to somewhat formed. I have a 4-month script for cholestyramine and I'm feeling good about it. I plan to report on this again as I've only been at it for a little over 3 weeks.
I would also like to point out a problem I had with DENIAL. I can't remember exact dates but it seems that I increased my frequency at a Chinese buffet around last May. It was great because my husband could have sushi and I was eating things that are part of my diet. Today, I am strongly questioning the wisdom what I did. I think that I so wanted to find a place to eat out that I convinced myself that it was a safe place. I no longer eat at the Chinese buffet.
So, thumbs up for cholestyramine, thumbs down for restaurants, and although I tried sorghum only one time, I'm scared to death of it for now.
Relapse - Cholestyramine helped! - Restaurants - Denial
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi DJ,
It's nice to see that the cholestyramine has been so helpful. And thank you for sharing your valuable insight. I have to agree — I didn't have much luck with sorghum flour either. In my case I never was absolutely sure (because it didn't always make me sick), but it happened often enough that I stopped using it and I have never regretted that decision.
It's just not worth it to me to eat at restaurants, since I don't have to do any regular business meals or anything of that sort. For several years I have eaten only 1 meal per year at a certain restaurant as part of a board of directors Christmas party. But this year, someone in the kitchen decided to slice open my baked potato, and judging from the way that a lot of pieces of foil were pressed down and left at various locations within the slice, they must have used a dull knife — probably a butter knife used to spread butter on Texas toast or hamburger buns before grilling them.
That was disappointing, because they specially baked a potato for me without any butter or anything else. The problem is that old habits are hard to break, so I'm sure that it never occurred to whoever did the dirty deed that they were sabotaging the whole project. Fortunately the D didn't last long, and I only felt "off" for a couple of days, but if I attend that party next year, the baked potato had better arrive untouched, or it will remain untouched by me.
Otherwise, whenever I have to attend an occasional banquet or whatever, I just don't eat there (because caterers surely don't have time to fiddle with special preparations, nor do I expect them to, or trust them to do it right, and it doesn't bother me a bit to see everyone else eating. Nor does it bother me to tell anyone why I'm not eating. The last banquet I attended I was seated next to a local surgeon who was running for a state senate office. When he asked me if I were on a diet, I told him that I had microscopic colitis and I named off most of the foods that I have to avoid. He probably had never heard of MC, and I reckon he immediately classified me as some kind of diet nut, because after that he pretty much ignored me (which is exactly how I prefer to be treated by politicians and political candidates).
Thank you for all the helpful information.
Tex
It's nice to see that the cholestyramine has been so helpful. And thank you for sharing your valuable insight. I have to agree — I didn't have much luck with sorghum flour either. In my case I never was absolutely sure (because it didn't always make me sick), but it happened often enough that I stopped using it and I have never regretted that decision.
It's just not worth it to me to eat at restaurants, since I don't have to do any regular business meals or anything of that sort. For several years I have eaten only 1 meal per year at a certain restaurant as part of a board of directors Christmas party. But this year, someone in the kitchen decided to slice open my baked potato, and judging from the way that a lot of pieces of foil were pressed down and left at various locations within the slice, they must have used a dull knife — probably a butter knife used to spread butter on Texas toast or hamburger buns before grilling them.
That was disappointing, because they specially baked a potato for me without any butter or anything else. The problem is that old habits are hard to break, so I'm sure that it never occurred to whoever did the dirty deed that they were sabotaging the whole project. Fortunately the D didn't last long, and I only felt "off" for a couple of days, but if I attend that party next year, the baked potato had better arrive untouched, or it will remain untouched by me.
Otherwise, whenever I have to attend an occasional banquet or whatever, I just don't eat there (because caterers surely don't have time to fiddle with special preparations, nor do I expect them to, or trust them to do it right, and it doesn't bother me a bit to see everyone else eating. Nor does it bother me to tell anyone why I'm not eating. The last banquet I attended I was seated next to a local surgeon who was running for a state senate office. When he asked me if I were on a diet, I told him that I had microscopic colitis and I named off most of the foods that I have to avoid. He probably had never heard of MC, and I reckon he immediately classified me as some kind of diet nut, because after that he pretty much ignored me (which is exactly how I prefer to be treated by politicians and political candidates).
Thank you for all the helpful information.
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,
So far, cholestyramine has made a difference. Time will tell.....
I've come to the conclusion that getting untainted food in a restaurant is not possible. Your potato may arrive unopened but it may have been placed on a bread slicing board before wrapping
I believe the degree of sensitivity we have to food is nearly impossible for others to understand. My Integrative Nurse Practitioner gets it. No one else does.
The consequence of eating tainted food is huge. It's not worth it.
Thanks for all you do.
DJ
So far, cholestyramine has made a difference. Time will tell.....
I've come to the conclusion that getting untainted food in a restaurant is not possible. Your potato may arrive unopened but it may have been placed on a bread slicing board before wrapping
I believe the degree of sensitivity we have to food is nearly impossible for others to understand. My Integrative Nurse Practitioner gets it. No one else does.
The consequence of eating tainted food is huge. It's not worth it.
Thanks for all you do.
DJ
The problem is that there is only one way that food preparation can go right, and thousands (or maybe tens of thousands) of ways that it can go wrong. And you're right that at the root of the problem is the fact that there is no way that most people who do not have the disease can comprehend the extent of the attention to detail that is required to successfully keep food safe. And that applies to each and every serving of food that is included in the meal. So the mathematical odds of receiving a complete meal that's actually safe, at a restaurant, would have to be incredibly slim.Thank you for your help, too.
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 really could go without eating in a restaurant but unfortunately my husband loves to eat out. We only eat out once per weekend but I hold my breath every time. Thanks for the update DJ, I'm glad that you're feeling better.
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
I agree, Tex. I'm finding other ways to be with people. Eating out doesn't work for me.
Thank you Polly. Without your post, I would not have the medication that's helping me. Are you continuing on the cholestyramine?
Thank you, Marcia. I hope you are less sensitive than some of us and that your weekly restaurant visits work out well. We are not all the same.
Thank you Polly. Without your post, I would not have the medication that's helping me. Are you continuing on the cholestyramine?
Thank you, Marcia. I hope you are less sensitive than some of us and that your weekly restaurant visits work out well. We are not all the same.
I've been on cholestyramine for a month now and I am not having the outcome I hoped for. As mentioned above, I experienced a degree of relapse since about last May and things recently worsened after I ate sorghum flour. My poop became WD and chewed food. I began taking cholestyramine, and within 24 hours I progressed positively to brown diarrhea and occasional semi-formed stool. The improvement did not last, even with my VERY restricted diet. MY BMs have increased in frequency and wateriness and I'm starting to see undigested food in my BMs again. I have continued with the cholestyramine and I am recently taking two Immodium per day. I'm wondering if it's time for Entocort again. 
Hi DJ,
Bummer! It sure sounds as though budesonide might be in order, possibly preceded by a short course of prednisone to act as sort of a "reset button", à la the treatment regimen used by bobh and ant.
Tex
Bummer! It sure sounds as though budesonide might be in order, possibly preceded by a short course of prednisone to act as sort of a "reset button", à la the treatment regimen used by bobh and ant.
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.
Tex, I wonder if I could uses a lower dose of Entocort with success. Are you aware of people who successfully used Entocort at a lower dose for relapse? My understanding from our group is that Entocort works best the first time and less effectively thereafter.
My holistic practitioner suggested that I consider a particular antibiotic that focuses its attention on the colon.
My holistic practitioner suggested that I consider a particular antibiotic that focuses its attention on the colon.
Hi DJ,
One would think that a lower dose would work, since you're probably not starting from square 1, but based on the experiences of many others here who have been in a similar situation, most seem to find a lower dose ineffective (at least initially). Often, after control is regained, the dose can be stepped down soon thereafter. But corticosteroids in general work much better with a larger starting dose that's slowly reduced over time. And the characteristic loss of effectiveness with repeated treatment programs provides additional support for the need for a higher starting dose. But it's true that the starting dose can often be relatively quickly reduced in such situations. That depends on how well one responds, of course.
Your practitioner is probably thinking of rifaximin. When this antibiotic was first approved by the FDA it appeared to be practically a miracle drug for treating MC, traveler's diarrhea, and various other forms of chronic diarrhea (at least it was hyped as the ultimate drug for treating diarrhea.) Unfortunately it hasn't performed as promised. Many members here have tried the drug (some of them have tried it multiple times), but to date I'm not aware of anyone who has realized more than a week or 2 of improvement after using the drug.
It simply doesn't work for an IBD, and the reason why it doesn't work, IMO, is because it fails to recognize the fact that the only way to alter gut bacteria population ratios in the long run is to make diet changes. As long as the same food is eaten before and after the treatment, long-term homeostasis will rule, and the gut bacteria population distribution will always tend to return to a similar "balance" based on diet. I have long maintained that this is the primary governing factor that determines long-term gut bacteria demographics, but everyone else seems to continue to ignore my theory.
Tex
One would think that a lower dose would work, since you're probably not starting from square 1, but based on the experiences of many others here who have been in a similar situation, most seem to find a lower dose ineffective (at least initially). Often, after control is regained, the dose can be stepped down soon thereafter. But corticosteroids in general work much better with a larger starting dose that's slowly reduced over time. And the characteristic loss of effectiveness with repeated treatment programs provides additional support for the need for a higher starting dose. But it's true that the starting dose can often be relatively quickly reduced in such situations. That depends on how well one responds, of course.
Your practitioner is probably thinking of rifaximin. When this antibiotic was first approved by the FDA it appeared to be practically a miracle drug for treating MC, traveler's diarrhea, and various other forms of chronic diarrhea (at least it was hyped as the ultimate drug for treating diarrhea.) Unfortunately it hasn't performed as promised. Many members here have tried the drug (some of them have tried it multiple times), but to date I'm not aware of anyone who has realized more than a week or 2 of improvement after using the drug.
It simply doesn't work for an IBD, and the reason why it doesn't work, IMO, is because it fails to recognize the fact that the only way to alter gut bacteria population ratios in the long run is to make diet changes. As long as the same food is eaten before and after the treatment, long-term homeostasis will rule, and the gut bacteria population distribution will always tend to return to a similar "balance" based on diet. I have long maintained that this is the primary governing factor that determines long-term gut bacteria demographics, but everyone else seems to continue to ignore my theory.
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 stopped the cholestyramine beginning today and I'm on Pepto now with a diet of meat, rice and sweet potatoes. If this fails, I'm back to Entocort.
I would like to believe that I can do something about this. I have a son and a grandson with severe gut problems looking just like mine and my grandmother's. I would give anything to help them before they progress to where I am. The bigger issue is autoimmune illness. Maybe something will come along.... I hope....I hope.
As always, thank you for everything.
DJ
I stopped the cholestyramine beginning today and I'm on Pepto now with a diet of meat, rice and sweet potatoes. If this fails, I'm back to Entocort.
I would like to believe that I can do something about this. I have a son and a grandson with severe gut problems looking just like mine and my grandmother's. I would give anything to help them before they progress to where I am. The bigger issue is autoimmune illness. Maybe something will come along.... I hope....I hope.
As always, thank you for everything.
DJ
DJ,
There's a good chance that the Pepto combined with a simple, safe diet will do the trick.
I find that convincing relatives to actually change their diet can be quite a challenge. Some will even agree that they need to change their diet, but they have a very tough time sticking with it when trying to balance their needs against their social calendar.
Hopefully you will have better results at that task than I've had over the years.
Best of luck to you with the new treatment plan, and you're most welcome, of course.
Tex
There's a good chance that the Pepto combined with a simple, safe diet will do the trick.
I find that convincing relatives to actually change their diet can be quite a challenge. Some will even agree that they need to change their diet, but they have a very tough time sticking with it when trying to balance their needs against their social calendar.
Hopefully you will have better results at that task than I've had over the years.Best of luck to you with the new treatment plan, and you're most welcome, of course.
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 have been on Colestipol, 1 gram BID and one lomotil daily. For me, it's been a game-changer. I am able to eat essentially anything I want, including all of the things on my list. To be honest, I just decided to say "F*** it" and try. I've been able to eat gluten, dairy, eggs, everything and I have absolutely no problems whatsoever. It's almost as if I'd never had MC at all. I know that it is possible to still have systemic issues of gluten exposure such as arthritis and what not but as of now, things are going well.
Community pharmacist
