Hello, Everyone,
As I read the postings on this support group, I get the impression that most members who are experimenting with dietary modifications do so on their own, or probably with the help from other members' postings. Has anyone gotten useful help as well either from a medical professional or nutrition expert?
I saw one posting with a report of a visit to a nutritionist, but the outcome of that visit didn't seem definitive to me.
Second related question: As a service to this forum, I am thinking about designing an web survey on diet for members to take part in. Would you first be willing to assist in the design and review of such a survey? (I would compile and report the results.)
It seems to me that this forum has enough members to make the results of a diet survey useful, though perhaps not (yet) statistically significant, (depending on how many people take part.)
With the apparent paucity of good diet information pertinent to CC and LC from the medical community, to me it would seem very useful and important to members of this community to have members' experience with diet compiled in the form of survey results.
Sincere thanks,
Roger
experimenting with foods
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Roger,
I know that Mary Beth, on this site, is a nutritionist and I hope she kicks in with her answers.
I have the opposite problem of a lot of folks here. I put weight on with my MC. Part of it started with being on the dreaded predisone. I have been told I need to lose weight. I worked with a dietician who was recommended by my GI. The first thing she told me was I needed more raw fruits, veggies and fiber in my diet. I tried to tell her the effects it would have on me without much success. I saw her a week later, after following her plan, and showed her how much my D had increased, how my weight hadn't changed (on a 900 calorie diet) and that it wasn't working in general. We had to do major modification to get something I could tolerate (food wise). However, I never lost more than 5 lbs in one month. Although I can tolerate more less cooked veggies now I still have to limit my raw veggies and fruit.
Jan
I know that Mary Beth, on this site, is a nutritionist and I hope she kicks in with her answers.
I have the opposite problem of a lot of folks here. I put weight on with my MC. Part of it started with being on the dreaded predisone. I have been told I need to lose weight. I worked with a dietician who was recommended by my GI. The first thing she told me was I needed more raw fruits, veggies and fiber in my diet. I tried to tell her the effects it would have on me without much success. I saw her a week later, after following her plan, and showed her how much my D had increased, how my weight hadn't changed (on a 900 calorie diet) and that it wasn't working in general. We had to do major modification to get something I could tolerate (food wise). However, I never lost more than 5 lbs in one month. Although I can tolerate more less cooked veggies now I still have to limit my raw veggies and fruit.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
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RUBYREDDOG
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Roger,
Interesting idea. My dietary choices are dictated mostly by my food intolerances, as identified by my Enterolab test results. And further limited by my food irritants which I have identified (still working on this one) through trial and error methods.
Some members here have a good general knowledge of what "most" of us can tolerate. We are all different and are at differing stages of achieving remission. Those in remission seem to be able to reintroduce some irritants back into their diets. I doubt that we can do that with our food intolerances. Some here are so sensitive that even the wrong toothpaste will result in a reaction.
Unfortunately there is no "one size fits all" with MC. Having said all that, I think that a survey, as you have proposed, might have some benefit to some of us now and for future members. Certainly, it would not hurt.
I remember how desperate I was at first, for some direction, regarding a path to follow to eliminate the damn explosive D I had. My GI certainly had no answers for me. Not until I found this wonderful board did I have any idea how to proceed with a recovery plan. Anyway that's my 3 cents worth of opinion.
Hotrod
P.S. I pretty much have adopted the " foods I have eliminated" post by Gloria In this topic category. She has a very detailed list that I find is an excellent source.
Interesting idea. My dietary choices are dictated mostly by my food intolerances, as identified by my Enterolab test results. And further limited by my food irritants which I have identified (still working on this one) through trial and error methods.
Some members here have a good general knowledge of what "most" of us can tolerate. We are all different and are at differing stages of achieving remission. Those in remission seem to be able to reintroduce some irritants back into their diets. I doubt that we can do that with our food intolerances. Some here are so sensitive that even the wrong toothpaste will result in a reaction.
Unfortunately there is no "one size fits all" with MC. Having said all that, I think that a survey, as you have proposed, might have some benefit to some of us now and for future members. Certainly, it would not hurt.
I remember how desperate I was at first, for some direction, regarding a path to follow to eliminate the damn explosive D I had. My GI certainly had no answers for me. Not until I found this wonderful board did I have any idea how to proceed with a recovery plan. Anyway that's my 3 cents worth of opinion.
Hotrod
P.S. I pretty much have adopted the " foods I have eliminated" post by Gloria In this topic category. She has a very detailed list that I find is an excellent source.
Hi Roger,
I am the dietitian Jan was referring to - I would be happy to participate in a survey.
I recently had some nutritional testing done and am in the process of experimenting with the results, but it's a bit soon to tell since it hasn't even been a week. Look for the recent thread on MRT test results or visit www.nowleap.com for more info.
So far I am encouraged by my results because it has provided me with some explanations of food reactions I have had in the past. I had 2 setbacks this week on my elimination diet, both times from eating out. I hardly ever eat out but this week I had a business meeting and birthday lunch and both times I got sick - first time from sulfites on fish and second times from a hidden peanut. I have decided there will be no more eating out for a while so I can really determine if the elimination diet is accurate.
A diet that is becoming popular in treating chronic diarrhea/IBS is the FODMAP diet. I believe that diet also has some merit. Many of the members on this site are intolerant to FODMAP foods, so it's a good place to start in looking for suspect foods.
Mary Beth
I am the dietitian Jan was referring to - I would be happy to participate in a survey.
I recently had some nutritional testing done and am in the process of experimenting with the results, but it's a bit soon to tell since it hasn't even been a week. Look for the recent thread on MRT test results or visit www.nowleap.com for more info.
So far I am encouraged by my results because it has provided me with some explanations of food reactions I have had in the past. I had 2 setbacks this week on my elimination diet, both times from eating out. I hardly ever eat out but this week I had a business meeting and birthday lunch and both times I got sick - first time from sulfites on fish and second times from a hidden peanut. I have decided there will be no more eating out for a while so I can really determine if the elimination diet is accurate.
A diet that is becoming popular in treating chronic diarrhea/IBS is the FODMAP diet. I believe that diet also has some merit. Many of the members on this site are intolerant to FODMAP foods, so it's a good place to start in looking for suspect foods.
Mary Beth
Hi Roger,
To add to what the other members said, basically, most people with MC are intolerant of gluten and dairy, and about half are intolerant of soy. Beyond that, we are all different, with a few who are intolerant of egg whites, corn, yeast, carrageenan, beef, etc. Note that one can only be intolerant, (from an autoimmune perspective), to proteins, (not to sugars - despite the fact that the medical community incorrectly refers to lactose maldigestion as a "lactose intolerance"). The proteins to which people with MC are intolerant of, all contain very similar amino acid chains, which are "almost" identical to the peptides that have been identified in wheat, as pro-inflammatory, and connected with celiac disease. IOW, our immune systems mistakenly misidentify certain peptides in these other proteins, as the peptides to which we are sensitive, in wheat gluten, (which have been identified as certain specific gliadins).
Beyond that, all other "problematic" foods, are, (as Hotrod pointed out), merely "irritants", and not true intolerances. IOW, they can serve to prolong an MC flare, (because they irritate the intestines), but they do not cause an autoimmune reaction. These "irritating" foods vary by the individual, and are often "dose-dependent", but they do not directly cause the intestinal inflammation, that is connected with MC. They can cause serious episodes of diarrhea, but they do not cause inflammation, villus atrophy, etc. The true food intolerances, of course, can and do cause inflammation, and even villous atrophy, (in those individuals whose small intestine is also affected by the disease. As Hotrod correctly pointed out, "irritants" can usually be added back into the diet, after the gut has healed for a couple of years - intolerances tend to be a life-long problem.
You will not likely get any information concerning the treatment of MC by diet, from a medical professional, because only a handful of GI docs in this country even realize that MC is affected by diet. All but a very few will argue that diet has nothing to do with MC. If you doubt that, ask your GI doc.
A survey will not hurt anything, of course, but we have been over all that information so many times, over the years, on this board, that it is unlikely that anything new will surface. Also, surveys usually reflect "opinions" of the moment, (which vary from time to time), rather than test results, (which are usually fairly consistent).
You can see who's intolerant of, or adversely affected by, "what", by looking at the list of food intolerances under each member's avatar. Note that those lists include not only intolerances, but also "irritants", in many cases. Also, here's a tabulation of food intolerance test results, together with genetic test results, for various members who have had tests done at Enterolab. This is not an all-inclusive list, of course, as there are members whose data still needs to be entered, (if I can locate it, in old posts). This is probably much more data than you will get from a survey, and it is all verified.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
Incidentally, if anyone knows where I can find test results that are not included in this list, please advise me as to where I can find it, so that I can add it to the list.
Tex
To add to what the other members said, basically, most people with MC are intolerant of gluten and dairy, and about half are intolerant of soy. Beyond that, we are all different, with a few who are intolerant of egg whites, corn, yeast, carrageenan, beef, etc. Note that one can only be intolerant, (from an autoimmune perspective), to proteins, (not to sugars - despite the fact that the medical community incorrectly refers to lactose maldigestion as a "lactose intolerance"). The proteins to which people with MC are intolerant of, all contain very similar amino acid chains, which are "almost" identical to the peptides that have been identified in wheat, as pro-inflammatory, and connected with celiac disease. IOW, our immune systems mistakenly misidentify certain peptides in these other proteins, as the peptides to which we are sensitive, in wheat gluten, (which have been identified as certain specific gliadins).
Beyond that, all other "problematic" foods, are, (as Hotrod pointed out), merely "irritants", and not true intolerances. IOW, they can serve to prolong an MC flare, (because they irritate the intestines), but they do not cause an autoimmune reaction. These "irritating" foods vary by the individual, and are often "dose-dependent", but they do not directly cause the intestinal inflammation, that is connected with MC. They can cause serious episodes of diarrhea, but they do not cause inflammation, villus atrophy, etc. The true food intolerances, of course, can and do cause inflammation, and even villous atrophy, (in those individuals whose small intestine is also affected by the disease. As Hotrod correctly pointed out, "irritants" can usually be added back into the diet, after the gut has healed for a couple of years - intolerances tend to be a life-long problem.
You will not likely get any information concerning the treatment of MC by diet, from a medical professional, because only a handful of GI docs in this country even realize that MC is affected by diet. All but a very few will argue that diet has nothing to do with MC. If you doubt that, ask your GI doc.
A survey will not hurt anything, of course, but we have been over all that information so many times, over the years, on this board, that it is unlikely that anything new will surface. Also, surveys usually reflect "opinions" of the moment, (which vary from time to time), rather than test results, (which are usually fairly consistent).
You can see who's intolerant of, or adversely affected by, "what", by looking at the list of food intolerances under each member's avatar. Note that those lists include not only intolerances, but also "irritants", in many cases. Also, here's a tabulation of food intolerance test results, together with genetic test results, for various members who have had tests done at Enterolab. This is not an all-inclusive list, of course, as there are members whose data still needs to be entered, (if I can locate it, in old posts). This is probably much more data than you will get from a survey, and it is all verified.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
Incidentally, if anyone knows where I can find test results that are not included in this list, please advise me as to where I can find it, so that I can add it to the list.
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 wrote 
), he said that it may be worth trying another medication (Asacol) after the two months treatment of Entocort was over. By this he implied that the Entocort may not be doing the trick while ignoring the possibility of the set back being triggered by diet. When I asked him about what he thought caused my set back, he said that he doubted gluten was the cause, but he did say that diary could be a secondary cause of inflammation. So I asked him what he thought was the primary cause and he said that it was difficult to say but it is probably some kind of 'bug' that was still there. At that point I had to control my anger. I know that a bug or virus may well have been the trigger for my MC and that it COULD still be the underlying cause, but he was dismissing food intolerances even as a POSSIBLE primary cause of ongoing MC. At this point I decided not to tell him anything about taking the EnteroLab tests.
What is worrying me is that in three weeks time, when I am next due to see him, if I show signs of improvement he will recommend I come off Entocort and if I have not improved much he will switch me to Asacol. I am pretty sure that what I will want is a few more months of Entocort combined with a GF, DF and SF diet and then an attempt to come of Entocort in a gradual process. But it does not look as if he will be recommending this course of action. Should I worry about switching to Asacol ? (of course I will be staying GF, DF and SF anyway.)
Best ant
I saw my GI doc a few days ago and described how, after about ten days on Entocort AND a self imposed GF, DF and SF diet, I had felt better and confident enough to ease up on the diet restrictions (as he had earlier encouraged me to do). I told him that a couple of days after coming off the diet I had a set back and had therefore put myself back on the diet. His reaction shocked me....... Instead of saying that it was worth staying on the diet to see if it would help bring my symptoms back under control (which after about 5 days back on it seems to have done by about 80%You will not likely get any information concerning the treatment of MC by diet, from a medical professional, because only a handful of GI docs in this country even realize that MC is affected by diet. All but a very few will argue that diet has nothing to do with MC. If you doubt that, ask your GI doc.
), he said that it may be worth trying another medication (Asacol) after the two months treatment of Entocort was over. By this he implied that the Entocort may not be doing the trick while ignoring the possibility of the set back being triggered by diet. When I asked him about what he thought caused my set back, he said that he doubted gluten was the cause, but he did say that diary could be a secondary cause of inflammation. So I asked him what he thought was the primary cause and he said that it was difficult to say but it is probably some kind of 'bug' that was still there. At that point I had to control my anger. I know that a bug or virus may well have been the trigger for my MC and that it COULD still be the underlying cause, but he was dismissing food intolerances even as a POSSIBLE primary cause of ongoing MC. At this point I decided not to tell him anything about taking the EnteroLab tests. What is worrying me is that in three weeks time, when I am next due to see him, if I show signs of improvement he will recommend I come off Entocort and if I have not improved much he will switch me to Asacol. I am pretty sure that what I will want is a few more months of Entocort combined with a GF, DF and SF diet and then an attempt to come of Entocort in a gradual process. But it does not look as if he will be recommending this course of action. Should I worry about switching to Asacol ? (of course I will be staying GF, DF and SF anyway.)
Best ant
He's just like most of the GI's everywhere. 
We all got more help here than from anywhere else including the major medical centers. Sad but true...........
Luckily, my GI said I could be her test patient after I told her what I learned here and from Dr. Fine. I told all the PP that she should be paying me!
We all got more help here than from anywhere else including the major medical centers. Sad but true...........
Luckily, my GI said I could be her test patient after I told her what I learned here and from Dr. Fine. I told all the PP that she should be paying me!
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
monitoring the responses to this topic so far
Hi, Everyone,
Again, I appreciate the thoughtful responses to my question and I hope the discussion continues with additional people joining in. My friend on whose behalf I take part in these discussions expressed her deep thanks for the information she gets here and perhaps no where else.
Though the survey I am considering may cover familiar ground for many, I hope such a tool will yield data and results in an especially well-organized and thus useful format for everyone to use. If many people take part, the results may also be powerful: If 80% of 100 people here report a problem with gluten there is a strong case to be made, on the other hand with 80% of ten people ... well, you get the idea. While everyone is different in regard to a diet that works, we may perhaps find some surprising results with power as well.
For now, I'll close this interim response to note: Any results of a survey I implement will only be for members of this support group.
I'm staying tuned!
-- Roger
Again, I appreciate the thoughtful responses to my question and I hope the discussion continues with additional people joining in. My friend on whose behalf I take part in these discussions expressed her deep thanks for the information she gets here and perhaps no where else.
Though the survey I am considering may cover familiar ground for many, I hope such a tool will yield data and results in an especially well-organized and thus useful format for everyone to use. If many people take part, the results may also be powerful: If 80% of 100 people here report a problem with gluten there is a strong case to be made, on the other hand with 80% of ten people ... well, you get the idea. While everyone is different in regard to a diet that works, we may perhaps find some surprising results with power as well.
For now, I'll close this interim response to note: Any results of a survey I implement will only be for members of this support group.
I'm staying tuned!
-- Roger
Ant,
Sadly, your experience is similar to many here. What bugs me the most is when docs tell patients to resume eating gluten even when told that eliminating it has worked. How counter-productive (not to mention unscientific) is that??!!
Stopping Entocort and moving to asacol is like taking a step backward. (BTW, asacol did nothing for me, although I know it has been helpful to some). Some have found that their primary medical care docs are more open-minded and will prescribe the Entocort for them if the GI doc refuses. Would yours do this? Good luck!
Roger,
I think Dr. Fine probably has this information, although I don't think it has been published. You might try an email to www.enterolab.com explaining your interest and seeing what they have. Also, have you checked out Dr. F.'s website at www.finerhealth.com? He discusses nutrition and MC there. When this board first started and we realized the importance of gluten, I did an informal survey for a while and found that 39 of the first 40 people who eliminated gluten got significantly better. BTW, your friend is lucky to have you!
Sadly, your experience is similar to many here.
What bugs me the most is when docs tell patients to resume eating gluten even when told that eliminating it has worked. How counter-productive (not to mention unscientific) is that??!!Stopping Entocort and moving to asacol is like taking a step backward. (BTW, asacol did nothing for me, although I know it has been helpful to some). Some have found that their primary medical care docs are more open-minded and will prescribe the Entocort for them if the GI doc refuses. Would yours do this? Good luck!
Roger,
I think Dr. Fine probably has this information, although I don't think it has been published. You might try an email to www.enterolab.com explaining your interest and seeing what they have. Also, have you checked out Dr. F.'s website at www.finerhealth.com? He discusses nutrition and MC there. When this board first started and we realized the importance of gluten, I did an informal survey for a while and found that 39 of the first 40 people who eliminated gluten got significantly better. BTW, your friend is lucky to have you!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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MaggieRedwings
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Morning Ant,
I could not agree with Polly more. Going to Asacol (which did not work for me either and that was taking 12 pills per day) is definitely taking a step backwards. When will these GIs wake up and smell the coffee? Their patients are their best feed of information for this disease.
Maggie
I could not agree with Polly more. Going to Asacol (which did not work for me either and that was taking 12 pills per day) is definitely taking a step backwards. When will these GIs wake up and smell the coffee? Their patients are their best feed of information for this disease.
Maggie
Maggie Scarpone
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RUBYREDDOG
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Ant,
I sometimes have the feeling that our G.I. doctors don't want us to achieve remission. After all, we are their source of income. And since our disease is not "life threatening" with only a "minor inconvience", (their views not mine) they are not motivated to cure us. Just being the devils advocate here.
Hotrod
I sometimes have the feeling that our G.I. doctors don't want us to achieve remission. After all, we are their source of income. And since our disease is not "life threatening" with only a "minor inconvience", (their views not mine) they are not motivated to cure us. Just being the devils advocate here.
Hotrod
Hi Ant,
Well everyone seems to experience Asacol differently. (So what else is new, HUH!)
First, you must make sure that your kidney function is evaluated prior to taking this medication, and periodically while you are taking it. I've read on some boards where physicians neglected this precaution.
I had reached full remission of symptoms, and was on a tapering dose of Entocort when GI Physician suggested we try Asacol for continued maintenance. After about 7 days bowel activity started to increase again, and revved up to full out D in less than 3 weeks -- even though still continuing on low dose Entocort. Asacol was DISCONTINUED, per Physician. He commented that appx. 5% of people are intolerant of this drug.
I don’t know why, but Asacol is usually the 1st of the 5-ASA’s that the GI’s seem to choose. After I failed on the Asacol, this Doc has suggested that he may try me on one of the other 5-ASA’s in the future – depending on ??? His next choice would be Colazal – and then Penatsa, in that order. However, I’m not so sure that I am keen on the 5-ASA’s after this experience --- particularly as I happen to be very fortunate in that I respond quickly and well to Entocort, so why mess with success!
As the steroid Entocort is so minimally absorbed – I’m wondering if part of the push to move to a 5-ASA isn’t really the price differential??? ((Bet most of us heard Pres. O. and his blue pill red pill speech!!))
But the strangest thing that I experienced with the Asacol was something of what I considered a full-court press of advertising and PR follow-up. This was either from drug's mfg. and/or the pharmacy, I couldn't tell which. 1.) I got multiple very pricey glossy Asacol advertising pamphlets in the mail. 2.) The pharmacy did an automatic refill of my prescription for Asacol – although I NEVER HAVE auto refills on any prescriptions, and 3.) I received 2 phones call from Pharmacy urging me to continue with this drug.
I’ve NEVER HAD ANYTHING LIKE THAT HAPPEN BEFORE!!
Very ODD!! And Inappropriate?
Wonder if others have experienced this type of thing?
Cheers,
Gayle
Well everyone seems to experience Asacol differently. (So what else is new, HUH!)
First, you must make sure that your kidney function is evaluated prior to taking this medication, and periodically while you are taking it. I've read on some boards where physicians neglected this precaution.
I had reached full remission of symptoms, and was on a tapering dose of Entocort when GI Physician suggested we try Asacol for continued maintenance. After about 7 days bowel activity started to increase again, and revved up to full out D in less than 3 weeks -- even though still continuing on low dose Entocort. Asacol was DISCONTINUED, per Physician. He commented that appx. 5% of people are intolerant of this drug.
I don’t know why, but Asacol is usually the 1st of the 5-ASA’s that the GI’s seem to choose. After I failed on the Asacol, this Doc has suggested that he may try me on one of the other 5-ASA’s in the future – depending on ??? His next choice would be Colazal – and then Penatsa, in that order. However, I’m not so sure that I am keen on the 5-ASA’s after this experience --- particularly as I happen to be very fortunate in that I respond quickly and well to Entocort, so why mess with success!
As the steroid Entocort is so minimally absorbed – I’m wondering if part of the push to move to a 5-ASA isn’t really the price differential??? ((Bet most of us heard Pres. O. and his blue pill red pill speech!!))
But the strangest thing that I experienced with the Asacol was something of what I considered a full-court press of advertising and PR follow-up. This was either from drug's mfg. and/or the pharmacy, I couldn't tell which. 1.) I got multiple very pricey glossy Asacol advertising pamphlets in the mail. 2.) The pharmacy did an automatic refill of my prescription for Asacol – although I NEVER HAVE auto refills on any prescriptions, and 3.) I received 2 phones call from Pharmacy urging me to continue with this drug.
I’ve NEVER HAD ANYTHING LIKE THAT HAPPEN BEFORE!!
Very ODD!! And Inappropriate?Wonder if others have experienced this type of thing?
Cheers,
Gayle
Dear Ant and Gayle,
I was put on Asacol and then Colazol (after reaction to the first) and couldn't tolerate either one. I have had success with Entocort and predisone. I will only use predisone as a last option (due to the side effects). Also, I believe someone posted in the past that one of those two drugs has dairy in it, just in case that is a problem with either one of you.
Gayle, I will say that when I discontinued my use of either drug I never got anything like what you experienced. I am not sure when this happened to you. I used both drugs about 3 years ago.
Good luck,
Jan
I was put on Asacol and then Colazol (after reaction to the first) and couldn't tolerate either one. I have had success with Entocort and predisone. I will only use predisone as a last option (due to the side effects). Also, I believe someone posted in the past that one of those two drugs has dairy in it, just in case that is a problem with either one of you.
Gayle, I will say that when I discontinued my use of either drug I never got anything like what you experienced. I am not sure when this happened to you. I used both drugs about 3 years ago.
Good luck,
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Hi Jan,
The experience I had with the "Asacol full court press" as I called it, was just this past March (2009). This was in Phoenix, and the pharmacy we use there is the country's "large major pharmacy".
I didn't really give it much of a thought at first, therefore did not "discuss" this with the pharmacy. It was after the last phone call that I really strongly thought -- WHAT THE HECK IS GOING ON HERE!
I now really wish I had talked to them.
This was reported to the GI Physician on my last visit this spring. He rolled his eyes and shrugged.
(I couldn't "read" that response.)
I've never needed Prednisone, PTL! But that run with the Asacol set me back and required that I run the Entocort program again. This time 7 weeks at 9mg/day, 4 weeks at 6mg/day, 6 weeks at 3mg/day will end soon and then I will attempt every other day. Cross my fingers and SEE WHAT HAPPENS.
Thanks,
Gayle
The experience I had with the "Asacol full court press" as I called it, was just this past March (2009). This was in Phoenix, and the pharmacy we use there is the country's "large major pharmacy".
I didn't really give it much of a thought at first, therefore did not "discuss" this with the pharmacy. It was after the last phone call that I really strongly thought -- WHAT THE HECK IS GOING ON HERE!
I now really wish I had talked to them.
This was reported to the GI Physician on my last visit this spring. He rolled his eyes
and shrugged.(I couldn't "read" that response.)
I've never needed Prednisone, PTL! But that run with the Asacol set me back and required that I run the Entocort program again. This time 7 weeks at 9mg/day, 4 weeks at 6mg/day, 6 weeks at 3mg/day will end soon and then I will attempt every other day. Cross my fingers and SEE WHAT HAPPENS.
Thanks,
Gayle
Gayle,
I suppose the GI was just as disgusted about the mail out as you were.
I have problems with all this "sharing" of information, personally. The big contracts between the big pharmacy chains and the big pharmaceutical companies and distributers along with the insurance companies are making it part of their contracts to have access to these records, I'm sure.
Sometimes encouraging a person to continue on a given medication might be beneficial to their health, and reduce costs down the road, but I just fear that one day this may lead to our being almost forced to take a treatment we'd prefer not to for fear of some sort of punitive action from the insurance company, particularly if it's an all powerful government system. The government should be policing and aiding the "system" and not running it, although they do have a tendency to hire people who don't know what they are doing. I've even had one of their inspector types tell me that she quit because she didn't know what she was doing. Would that they were ALL that honest!
I suppose that eventually, we'll go back to not routinely biopsying the colon of people with diarrhea as it will be considered too costly. That practice was only recently begun, thus all our diagnoses.
Without a diagnosis, people won't be able to find this site anyway, unless they are pretty good at self-diagnosis, and just match their symptoms to those of us on this site, if they are lucky. I guess at that point, most who receive treatment will just be told to take anti-diarrheals and that's it. That's what I expect will happen in many cases, unfortunately.
Yours, Luce
I suppose the GI was just as disgusted about the mail out as you were.
I have problems with all this "sharing" of information, personally. The big contracts between the big pharmacy chains and the big pharmaceutical companies and distributers along with the insurance companies are making it part of their contracts to have access to these records, I'm sure.
Sometimes encouraging a person to continue on a given medication might be beneficial to their health, and reduce costs down the road, but I just fear that one day this may lead to our being almost forced to take a treatment we'd prefer not to for fear of some sort of punitive action from the insurance company, particularly if it's an all powerful government system. The government should be policing and aiding the "system" and not running it, although they do have a tendency to hire people who don't know what they are doing. I've even had one of their inspector types tell me that she quit because she didn't know what she was doing. Would that they were ALL that honest!
I suppose that eventually, we'll go back to not routinely biopsying the colon of people with diarrhea as it will be considered too costly. That practice was only recently begun, thus all our diagnoses.
Without a diagnosis, people won't be able to find this site anyway, unless they are pretty good at self-diagnosis, and just match their symptoms to those of us on this site, if they are lucky. I guess at that point, most who receive treatment will just be told to take anti-diarrheals and that's it. That's what I expect will happen in many cases, unfortunately.
Yours, Luce