Tex, Joan, Andi and Barbara,
Thank you all for taking your time to reply to my post.
Tex, thanks for all the links. I was unable to link to the article at Interscience, but will try again later.
At this time I plan to continue with the Bentyl for a few more months. However, Bentyl, I believe, is only an anti spasmodic medication. I am afraid it will not treat the inflammation in my colon.
I return to my GI doctor in December, because he will not refill my prescription for Bentyl without an appointment. The GI doctor I now see (as opposed to my first GI doc) does not think I need to be on Entocort at this time.
However, I do wonder if it would be better to take Entocort if it will possibly help reduce the inflammation.
My greatest concern is that my LC will get continue to worsen without taking any anti- inflammatory medication.
When I first started having diarrhea in 2007, I didn't have any stomach pains. Now I am having more abdominal pain when I have an attack of diarrhea and even without diarrhea.
Even though Entocort is suppose to work in the intestinal track, I worry that it could possibly enter into my bloodstream if I should have a "leaky gut".
I have finally decided to go on a gluten free diet, even though neither of the two GI docs I have seen feel that it is necessary to do so, nor would help with my LC.
I have never had any problem with food sensitivities and hate to go on such a restrictive diet if it is not necessary, but I am willing to do almost anything to try to return my life to normalcy.
My hesistancy with taking Entocort is that it may somehow end up in my bloodstream.
I am told that it only breaks down in the intestinal track and is confined to this area.
However, if one should have a "leaky gut" then isn't it possible to enter the bloodstream? As a person with diabetes (controlled by diet and exercise) I do everything I can to maintain normal blood glucose and steroids can upset that.
I would like to hear from anyone who may know about or have personally experienced "leaky gut syndrome."
Thank you,
Issy
_________________
IssyW123
Bentyl and LC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Issy,
You are quite correct, Bentyl is an anti-spasmodic, and will not address the inflammation caused by MC. Your concerns about not controlling the inflammation over the long-term may be justified, in that there is an assumed risk that untreated MC may carry the same risk that untreated celiacs face, namely an increased risk of certain forms of non-Hodgkin's lumphoma. I'm not aware that such an increase in risk has ever been proven, (for MC - it has been proven for celiac disease), but I believe that it is generally accepted that it may be a valid possibility.
Another possible risk connected with failure to treat the inflammation is, as you suggest, disease progression. I know that in my own case, the longer it went untreated, the more severe my symptoms became, including increased pain levels. Up until quite recently, I truly believed that MC could not segue into UC, (based on the lack of documented cases in the literature). In the last couple of years, however, enough evidence has surfaced to the contrary, that I now believe that there is definitely a certain degree of risk that MC can progress to UC. At this point, with the lack of sufficient data to assure reliable statistics, it's difficult to say if the various treatment programs in common use will positively prevent such a conversion, or not.
As a matter of fact, we have a long-time member who has had this happen to her, within the past year, (I believe she was diagnosed with UC in January or February of this year). If I'm not mistaken, she was not following any treatment program, because she was asymptomatic, and only reacted to NSAIDs. IOW, as long as she avoided the use of NSAIDs, she was symptom free.
Your concerns about the possible absorption of budesonide, (Entocort), on the surface appear to be valid, due to the fact that many times, certain types of tests of new meds are carried out on "normal" people, and anyone with MC most definitely does not have a "normal" digestive system. Still, the encapsulation used with Entocort EC prevents it from becoming activated until it reaches the ileum, (the lower third of the small intestine), and the colon. Since virtually all nutrients are absorbed in the small intestine, (theoretically, at least, only water should be absorbed in the colon), that implies that even with the leaky gut syndrome, (LGS), absorption should be restricted to the lower third of the small intestine, which will significantly limit the absorption potential. More than that, though, research shows that the glucocorticoids produce a prompt vascular anti-permeability effect that may last for several hours. IOW, on a microscopic level, the budesonide will tend to suppress inflammation on a cellular level, which presumably will close the tight junctions between cells, thus eliminating LGS issues long enough to prevent LGS from having an adverse effect on the absorption of the budesonide itself. Also, budesonide is a highly fat soluble molecule, and the inability to absorb fat, is one of the key characteristics of MC.
You are correct, Entocort can affect blood glucose levels, and that is something that needs to be monitored, (and discussed with your doctor), if you should decide to use Entocort. I applaud your decision to try the GF diet, (especially in view of the diabetes issue), because unlike any of the meds that are effective for treating MC, the diet has no adverse side effects, and it is a fact that people who adhere to the GF diet, live longer that the general population, on average, which is pretty strong evidence that it's a healthier diet that what most people are eating.
I haven't listed any references here, but if you're interested in pursuing in more detail, any part of what I've posted here, just ask, and I'll be happy to post some links to references that discuss these issues. Or, if I haven't done a good job of explaining any of this, and I've confused the issue in any way, please don't hesitate to ask, and I'll try to do a better job of explaining what I'm trying to say.
Tex
P S I believe that my LGS was caused by eating too much sugar for most of my life.
You are quite correct, Bentyl is an anti-spasmodic, and will not address the inflammation caused by MC. Your concerns about not controlling the inflammation over the long-term may be justified, in that there is an assumed risk that untreated MC may carry the same risk that untreated celiacs face, namely an increased risk of certain forms of non-Hodgkin's lumphoma. I'm not aware that such an increase in risk has ever been proven, (for MC - it has been proven for celiac disease), but I believe that it is generally accepted that it may be a valid possibility.
Another possible risk connected with failure to treat the inflammation is, as you suggest, disease progression. I know that in my own case, the longer it went untreated, the more severe my symptoms became, including increased pain levels. Up until quite recently, I truly believed that MC could not segue into UC, (based on the lack of documented cases in the literature). In the last couple of years, however, enough evidence has surfaced to the contrary, that I now believe that there is definitely a certain degree of risk that MC can progress to UC. At this point, with the lack of sufficient data to assure reliable statistics, it's difficult to say if the various treatment programs in common use will positively prevent such a conversion, or not.
As a matter of fact, we have a long-time member who has had this happen to her, within the past year, (I believe she was diagnosed with UC in January or February of this year). If I'm not mistaken, she was not following any treatment program, because she was asymptomatic, and only reacted to NSAIDs. IOW, as long as she avoided the use of NSAIDs, she was symptom free.
Your concerns about the possible absorption of budesonide, (Entocort), on the surface appear to be valid, due to the fact that many times, certain types of tests of new meds are carried out on "normal" people, and anyone with MC most definitely does not have a "normal" digestive system. Still, the encapsulation used with Entocort EC prevents it from becoming activated until it reaches the ileum, (the lower third of the small intestine), and the colon. Since virtually all nutrients are absorbed in the small intestine, (theoretically, at least, only water should be absorbed in the colon), that implies that even with the leaky gut syndrome, (LGS), absorption should be restricted to the lower third of the small intestine, which will significantly limit the absorption potential. More than that, though, research shows that the glucocorticoids produce a prompt vascular anti-permeability effect that may last for several hours. IOW, on a microscopic level, the budesonide will tend to suppress inflammation on a cellular level, which presumably will close the tight junctions between cells, thus eliminating LGS issues long enough to prevent LGS from having an adverse effect on the absorption of the budesonide itself. Also, budesonide is a highly fat soluble molecule, and the inability to absorb fat, is one of the key characteristics of MC.
You are correct, Entocort can affect blood glucose levels, and that is something that needs to be monitored, (and discussed with your doctor), if you should decide to use Entocort. I applaud your decision to try the GF diet, (especially in view of the diabetes issue), because unlike any of the meds that are effective for treating MC, the diet has no adverse side effects, and it is a fact that people who adhere to the GF diet, live longer that the general population, on average, which is pretty strong evidence that it's a healthier diet that what most people are eating.
I haven't listed any references here, but if you're interested in pursuing in more detail, any part of what I've posted here, just ask, and I'll be happy to post some links to references that discuss these issues. Or, if I haven't done a good job of explaining any of this, and I've confused the issue in any way, please don't hesitate to ask, and I'll try to do a better job of explaining what I'm trying to say.
Tex
P S I believe that my LGS was caused by eating too much sugar for most of my life.
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.
Bentyl, LC & LGS
Tex,
Thanks again for replying to my last post. Your knowledge is quite remarkable and what you have discussed in your last post, gives me pause to "rethink" my treatment plan. I will definitely discuss this with my GI doc at my next appointment and see if he thinks I should be using some other medication than just the Bentyl.
Bentyl has been effective thus far in helping me to control the number of episodes of diarrhea, from once or twice a day, to no more than one or two per week....if even that many. But as I mentioned in my previous post, if I forget to take a dosage and eat something that doesn't agree with me, I will have a bad "D" attack. Then I have to pull out the Immodium (one pill) and that will work for about two full days.
Speaking of Immodium, would you happen to know if it is safe for long term use? When I told my first GI doc how it worked for me, he said that it was fine to use that and the Pepto Bismol. He suggested I used the Immodium more than the Pepto Bismol.
When I went to my second (and current) GI doc, he told me to try not to use either the PB or the Immodium too often. That is why he prescribed Bentyl.
Regarding "Non-Hodgkin's lymphoma," I was under the impression that cancer was not a risk factor with Lymphocyctic Colitis. Perhaps you could direct me to a medical site that discusses this relationship.
At this time I do not think I have a leaky gut and when I tried to discuss this with my GI doc at my last appointment, he seemed reluctant to even disguss LGS. However, I was his last appointment for the day, so perhaps he was just tired and wanted to get home!
Tex, you have amassed great deal of knowledge with respect to MC. I have learned much more from reading posts (especially yours) on this website, than from either of the two GI doctors I have seen.
I am very grateful for your help. I think you are a valuable asset to this support group!
Issy
Thanks again for replying to my last post. Your knowledge is quite remarkable and what you have discussed in your last post, gives me pause to "rethink" my treatment plan. I will definitely discuss this with my GI doc at my next appointment and see if he thinks I should be using some other medication than just the Bentyl.
Bentyl has been effective thus far in helping me to control the number of episodes of diarrhea, from once or twice a day, to no more than one or two per week....if even that many. But as I mentioned in my previous post, if I forget to take a dosage and eat something that doesn't agree with me, I will have a bad "D" attack. Then I have to pull out the Immodium (one pill) and that will work for about two full days.
Speaking of Immodium, would you happen to know if it is safe for long term use? When I told my first GI doc how it worked for me, he said that it was fine to use that and the Pepto Bismol. He suggested I used the Immodium more than the Pepto Bismol.
When I went to my second (and current) GI doc, he told me to try not to use either the PB or the Immodium too often. That is why he prescribed Bentyl.
Regarding "Non-Hodgkin's lymphoma," I was under the impression that cancer was not a risk factor with Lymphocyctic Colitis. Perhaps you could direct me to a medical site that discusses this relationship.
At this time I do not think I have a leaky gut and when I tried to discuss this with my GI doc at my last appointment, he seemed reluctant to even disguss LGS. However, I was his last appointment for the day, so perhaps he was just tired and wanted to get home!
Tex, you have amassed great deal of knowledge with respect to MC. I have learned much more from reading posts (especially yours) on this website, than from either of the two GI doctors I have seen.
I am very grateful for your help. I think you are a valuable asset to this support group!
Issy
IssyW123
PLEASE do try going gluten free. It worked so well for me that I had to take prunes and prune juice to get my sample to send to EnteroLab! (Then that %$@#%&^*(%^#$ soy raised its ugly head.....It seems everything has soy even vitamins.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Issy,
Sorry for the delayed response - I read your post almost three hours ago, but I had to leave to go load a truck, and I just now returned. As long as you are not constipated, Immodium should be very safe to use, since it works by simply reducing motility. It's about as trouble-free as any med that is used to control D. As long as you do not react adversely to Pepto-Bismol, (some members do), it is generally safe also, except for the fact that bismuth, (the "bismol" part), is a heavy metal, and it tends to accumulate in the body. The very first treatment that was developed for MC was developed by Dr. Kenneth Fine, (the founder of Enterolab), and the treatment was 8 Pepto tablets daily, for 8 weeks. The treatment could not safely continue past 8 weeks, though, due to the risk of a toxic buildup of Bismuth.
I apologize for misleading you about the risk of lymphoma with LC. You are correct - LC is not known to carry an increased risk of cancer. The risk comes about only for people who are gluten sensitive, but do not treat it. Of course, it turns out that almost all of us are gluten sensitive, and the possibility exists that those few of us who do not seem to be gluten sensitive, might actually be gluten sensitive, but not have any symptoms, (similar to asymptomatic celiacs). Here's a discussion about the increased risk of lymphoma, that goes with untreated gluten sensitivity:
http://www.celiac.com/articles/1007/1/C ... Page1.html
Obviously, that isn't a medical site, but it offers a good coverage of a fairly recent medical research report that is referenced in the article. Here is the full text of the research report:
http://www.eurojgh.com/pt/re/ejgh/fullt ... 28!8091!-1
Your GI doc may not fully understand the mechanism by which LGS occurs, (it may not come up very often in his work), or, as you say, since it's complex enough that it takes a while to describe in detail, he may have just been reluctant to tackle a topic that intense, so late in the day.
I appreciate the nice compliments, (and those from G'ma Mary, also), but you really shouldn't say things like that, because I might get the big head, and think that I actually know what I'm talking about. LOL.
Thanks for the kind words, though.
Tex
Sorry for the delayed response - I read your post almost three hours ago, but I had to leave to go load a truck, and I just now returned. As long as you are not constipated, Immodium should be very safe to use, since it works by simply reducing motility. It's about as trouble-free as any med that is used to control D. As long as you do not react adversely to Pepto-Bismol, (some members do), it is generally safe also, except for the fact that bismuth, (the "bismol" part), is a heavy metal, and it tends to accumulate in the body. The very first treatment that was developed for MC was developed by Dr. Kenneth Fine, (the founder of Enterolab), and the treatment was 8 Pepto tablets daily, for 8 weeks. The treatment could not safely continue past 8 weeks, though, due to the risk of a toxic buildup of Bismuth.
I apologize for misleading you about the risk of lymphoma with LC. You are correct - LC is not known to carry an increased risk of cancer. The risk comes about only for people who are gluten sensitive, but do not treat it. Of course, it turns out that almost all of us are gluten sensitive, and the possibility exists that those few of us who do not seem to be gluten sensitive, might actually be gluten sensitive, but not have any symptoms, (similar to asymptomatic celiacs). Here's a discussion about the increased risk of lymphoma, that goes with untreated gluten sensitivity:
http://www.celiac.com/articles/1007/1/C ... Page1.html
Obviously, that isn't a medical site, but it offers a good coverage of a fairly recent medical research report that is referenced in the article. Here is the full text of the research report:
http://www.eurojgh.com/pt/re/ejgh/fullt ... 28!8091!-1
Your GI doc may not fully understand the mechanism by which LGS occurs, (it may not come up very often in his work), or, as you say, since it's complex enough that it takes a while to describe in detail, he may have just been reluctant to tackle a topic that intense, so late in the day.
I appreciate the nice compliments, (and those from G'ma Mary, also), but you really shouldn't say things like that, because I might get the big head, and think that I actually know what I'm talking about. LOL.
Thanks for the kind words, though.
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 remember at one time hearing a "theory" that people with uncontrolled MC had a higher risk of cancer, but I don't remember seeing this report you referred to from celiac.com. I find all of that just one more reason to remain gluten free - you see, both my mother and her sister died of non-Hodgkins Lymphoma. To date, I have out-lived my mother, but not my aunt. There is plenty of other cases of various forms of cancer in my family, on both sides. However, the corelation with non-Hodgkins Lymphoma really gets my attention.
I never did plan on going off this diet, just because I enjoy no longer living in the bathroom. However, now I have even more of a reason! Thanks for the info, Tex!
G'ma Mary
I remember at one time hearing a "theory" that people with uncontrolled MC had a higher risk of cancer, but I don't remember seeing this report you referred to from celiac.com. I find all of that just one more reason to remain gluten free - you see, both my mother and her sister died of non-Hodgkins Lymphoma. To date, I have out-lived my mother, but not my aunt. There is plenty of other cases of various forms of cancer in my family, on both sides. However, the corelation with non-Hodgkins Lymphoma really gets my attention.
I never did plan on going off this diet, just because I enjoy no longer living in the bathroom. However, now I have even more of a reason! Thanks for the info, Tex!
G'ma Mary
Those who are not part of the solution, are part of the problem.
G'ma Mary,
That's enough to get anyone's attention. I'm not aware of any cases of NHL in my family, but I certainly don't plan to ever stop following the diet, either.
You're most welcome, and I hope the diet continues to be your ticket to many, many more years of happy GF living.
Tex
That's enough to get anyone's attention. I'm not aware of any cases of NHL in my family, but I certainly don't plan to ever stop following the diet, either.
You're most welcome, and I hope the diet continues to be your ticket to many, many more years of happy GF living.
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.
Issy,
Personally, I feel that the increased risk of lymphoma is very, very slight - especially in light of the most recent research discussed in the article cited above. You will note that, so far at least, no member of this board has encountered that problem, themselves.
Tex
Personally, I feel that the increased risk of lymphoma is very, very slight - especially in light of the most recent research discussed in the article cited above. You will note that, so far at least, no member of this board has encountered that problem, themselves.
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.
Thank you everyone for your replies. Again, thank you Tex for the follow-up relpy to my last post. I will follow up with the links you sent.
Even though I join this group right after I was diagnosed with LC (July 2007) I guess I was sort of in denial that I could have such a serious problem. I had hoped in time that it would just go away because out of the clear blue in appeared in my life so suddenly. It was if one day I was fine and the next day I am now "cursed" with a condition that has no cure.
When my first GI (who did my colonoscopy and endoscopy) told me I had a very minor problem, I thought it would just go away in time. Unfortunately that has not been the case. I truly can sympathize with others who have a much more severe condition than mine. I know how much this issue has become a burden in my daily life.
Before I was diagnosed and was not on any medication I was afraid to go anywhere because I might have a sudden attack. There were numerous times when I would be driving somewhere and suddenly felt an attack coming on and just barely made it home in time.
Being a very private person, I have not felt comfortable discussing my LC with anyone other than my GI and yet the two that I have seen thus far, have offered little advice in how to deal with LC. I guess that is why my current GI is focusing on IBS instead of LC, even though the biospy from my colonoscopy indicated that I do indeed have LC.
I am so thankful that there is this support group. I don't have a lot of free time to go online, but I have learned so much about MC from reading various posts. I think that the more we educate ourselves about our particular medical issues the better we are able to deal with our problems. The old axiom "knowledge is power" is why I am a member of this support group.
From the many posts I have read, it seems as if no one has managed to become "cured," but only manage to keep it in remission. Am I wrong about this? Has anyone actually been free of "D" and are able to eat as they once did, prior to getting MC? If so, I would like to know what you did to overcome this condition.
BTW Tex, do you have a background in the medical field? If not you have certaintly well educated yourself with respect to MC and all that relates to it. Job well done!!!
Even though I join this group right after I was diagnosed with LC (July 2007) I guess I was sort of in denial that I could have such a serious problem. I had hoped in time that it would just go away because out of the clear blue in appeared in my life so suddenly. It was if one day I was fine and the next day I am now "cursed" with a condition that has no cure.
When my first GI (who did my colonoscopy and endoscopy) told me I had a very minor problem, I thought it would just go away in time. Unfortunately that has not been the case. I truly can sympathize with others who have a much more severe condition than mine. I know how much this issue has become a burden in my daily life.
Before I was diagnosed and was not on any medication I was afraid to go anywhere because I might have a sudden attack. There were numerous times when I would be driving somewhere and suddenly felt an attack coming on and just barely made it home in time.
Being a very private person, I have not felt comfortable discussing my LC with anyone other than my GI and yet the two that I have seen thus far, have offered little advice in how to deal with LC. I guess that is why my current GI is focusing on IBS instead of LC, even though the biospy from my colonoscopy indicated that I do indeed have LC.
I am so thankful that there is this support group. I don't have a lot of free time to go online, but I have learned so much about MC from reading various posts. I think that the more we educate ourselves about our particular medical issues the better we are able to deal with our problems. The old axiom "knowledge is power" is why I am a member of this support group.
From the many posts I have read, it seems as if no one has managed to become "cured," but only manage to keep it in remission. Am I wrong about this? Has anyone actually been free of "D" and are able to eat as they once did, prior to getting MC? If so, I would like to know what you did to overcome this condition.
BTW Tex, do you have a background in the medical field? If not you have certaintly well educated yourself with respect to MC and all that relates to it. Job well done!!!
IssyW123
Exactly! Being able to learn from each other is an extremely effective way to stay on the cutting edge of what's happening in the real world, concerning this disease. When someone's doctor prescribes a "new" med to try, in just a short amount of time, every one of us has access to information on how well it worked, (or didn't work), and when new research is published, as soon as one of us becomes aware of it, we all know about it. Exchanging information every day, over the internet, gives us a huge advantage over the doctors who try to try to treat this disease, because they simply don't have the time to spare, to constantly update their knowledge of it.I am so thankful that there is this support group. I don't have a lot of free time to go online, but I have learned so much about MC from reading various posts. I think that the more we educate ourselves about our particular medical issues the better we are able to deal with our problems. The old axiom "knowledge is power" is why I am a member of this support group.
I don't believe that a "cure" is possible, without reprogramming certain genes, and in that respect, MC is like the other IBDs, (Crohn's & UC), in that it can wax and wane, for various reasons, or for no reason at all, sometimes. Therefore, just like the other IBDs, it is possible to experience periods of spontaneous remission, in which all symptoms seem to vanish. These periods may last for only a few days, or a few weeks, but in many cases they last for months, and even years. No one knows what causes periods of spontaneous remission, and no one knows why they end.
We have a few members who have experienced this, and one or two who are enjoying spontaneous remission right now. Also, there are a few others who seem to be able to maintain a state of "modified spontaneous remission", by limiting, (though not necessarily completely eliminating), certain food items from their diet. Several of them seem to be OK for the most part, with only occasional episodes of reactions. MC seems to be a lot like snowflakes - every case is unique, and yet they are all very similar in many ways.
Actually, all my formal education was in engineering, and I have absolutely no formal training in the medical field. After my symptoms started, and they became progressively worse for a couple of years, and I still wasn't able to find any help in the medical system, I truly regretted that I hadn't spent my time studying medicine instead, (I spent many hours mentally kicking my butt for making that mistake), and so I set out to try to learn as much as I could about my own issues, by researching and studying what was available on the internet. The trouble with the internet, of course, is that you have to know what you are looking for, in order to find it, and I didn't even know what I had, for years. Also, (at least in regard to diseases such as Mc), most of what you can find on the internet is misinformation, meaning that it is either questionable, irrelevant, or just plain incorrect, so it takes a lot of extra time to separate the valid information from the garbage. Anyway, to cut to the chase: in the last four or five years, I've spent many, many hours trying to learn all I can about this disease, but I have to say that as interesting and as valuable as some of the research reports are, when it comes down to the practical things, such as actually controlling the symptoms of MC and learning to live with it, I've learned more from the experiences of other members here, than I've learned anywhere else.
Be aware that there are a lot of members of this board who know as much, (or more), than I do about these issues, but they just don't have the time, (or the inclination), to post very often. To me, this board seems a lot like an on-going seminar, or a graduate-level course in MC and everything that's related. Every morning, when I wake up, I can't wait to boot a computer, so that I can read the new posts, and see what I will learn that day.
Again, thank you so much for your kind words.
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.