I've been doing great on the Entocort. GI is keeping me on it 3X day for one more month. He's pretty sure that I will be cured after that. If not, he wants to me to take 5 mg. of Prednisone as a maintenance. Not if I can help it. He said they don't know what causes MC. When I asked if it had anything to do with what I ate, he said "absolutely not." After those two responses, I decided he wouldn't be receptive to the lab results from Enterolab, so I didn't bother to tell him. He has no idea that I'm following a restricted diet. He said the Entocort is the reason that I don't have arthritis in my hands anymore. He said one other patient of his reported the same response. I'm the second patient he's had with MC. He told me that I'm fortunate that he was able to diagnose my condition. He said that a GP or an internist would never have known. He was pretty pleased with himself.
Things are pretty stable - no more gas, rumbling or loose D. But on Sunday I had to run to the bathroom with D. Just once; hasn't happened again. This is a new phase for me. For 8 months, I had nothing but D several times per day. Now I'm pretty normal a couple of times a day. Did I have a reaction to something I'd eaten, even though I'm on Entocort? I had eaten a Quaker Oats rice cake with organic peanut butter and almond paste 3 1/2 hours earlier. The peanut butter and almond paste were free of any soy or food additives, so I looked closer at the rice cake ingredients. It had maltodextrin and "other natural flavors". I hate to think that I'm that sensitive, but maybe I am.
GI Visit
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gloria,
I think you were very wise to not mention the Enterolab results to your GI doc, especially since he seemed to be so proud of himself for actually correctly diagnosing your problem. I get the impression that you feel that he was a little too proud of himself, and I totally agree with you. (Kinda makes you wonder how often he makes a correct diagnosis, doesn't it?) Generally, people who have to toot their own horn, probably don't have anything worth tooting about, in the first place. LOL.
Several members of our board have encountered GI docs who deny that diet has anything to do with IBDs, and when confronted by the patient, with evidence to the contrary, they became upset, and in some cases, virtually infuriated. That attitude, (don't mess with me, 'cause I'm God), of course, does nothing to help the patient resolve her or his MC issues. Also, he would probably be mad as a wet hen, if you were to ever tell him that you are on a diet which avoids all your trigger foods.
And, IMO, he is completely misguided on his recommended maintenance course of Prednisone. I would never, ever, allow a doctor to talk me into doing that. Prednisone can be safely used, in a short-term treatment program, (when properly done), but if you have any questions about the dangers of long-term use of Prednisone, there are a number of posts in the archives, about the risks of long-term use, and the horrors of trying to withdraw from Prednisone.
Arguably, the best choice of a maintenance drug to use, on a long-term basis, is Entocort. It does not have the draconian side effect risks of Prednisone, (since it's not a systemic), and it only begins to activate after reaching the lower third of the small intestine, and the colon. There are a number of members here who can attest to it's effectiveness at one-third of the daily dose that you are taking, (or even less). Still, after your gut heals, a proper diet, (free of all your trigger foods), should be adequate to control your symptoms, (without any meds), unless you have an unusually severe case.
When ending a treatment program based on the use of Entocort, (as your doctor is suggesting), the day of reckoning will usually arrive by the eighth week after the treatment is terminated. IOW, if you are still D-free, after eight weeks without Entocort, you are probably out of the woods, and will be able to maintain remission indefinitely, (unless, of course, something rocks the boat).
I suppose it's possible that you might have reacted to something you ate, even though you are taking Entocort. It seems that some MC patients are so sensitive, that Entocort will not necessarily handle an "indiscretion" in the diet, whereas others can eat anything they please, and the Entocort will shield them from a "reaction". We are all different, in many aspects.
Regarding the rice cake: at one time, "other natural flavors" would have been highly suspect, but since the new labeling law went into effect on January 1, 2oo6, ingredients such as gluten, soy, casien, yeast, and eggs, cannot be hidden in them. In the United States, maltodextrin can be legally made from corn, potatoes, and/or rice. It is almost always made from cornstarch. It can also be made from wheat, but if it is, the name "wheat" will have to appear on the label, next to that ingredient.
A few of us have had problems with peanut and/or almond butter. I couldn't eat them without problems, for several years, while my gut was healing, but now I can handle them, (sort of - I don't get D, but they make me feel as thought I have an upset stomach, for a few hours, if I eat a significant amount).
If I read your post correctly, you will continue to take Entocort at the full normal dosage rate, for another month. Like all the corticosteroids, it has to be gradually withdrawn from, so that means that after a month, he will schedule you for a gradually reduced dosage rate, over a period of several weeks, so that you can slowly phase it out.
I have a "gut" feeling that he is not leaving you on the Entocort treatment program long enough, to allow your gut to heal. Six months seems to be a reasonable minimum treatment period for budesonide, according to our experience, if my memory isn't playing tricks on me. Of course, I'm no doctor, so please remember that nothing I have said here is backed by either a medical degree, or a white coat. It's just my opinion, based on my own experience, and the experience of others.
Thanks for the update, and I wish you continued good luck with your treatment program.
Tex
I think you were very wise to not mention the Enterolab results to your GI doc, especially since he seemed to be so proud of himself for actually correctly diagnosing your problem. I get the impression that you feel that he was a little too proud of himself, and I totally agree with you. (Kinda makes you wonder how often he makes a correct diagnosis, doesn't it?) Generally, people who have to toot their own horn, probably don't have anything worth tooting about, in the first place. LOL.
Several members of our board have encountered GI docs who deny that diet has anything to do with IBDs, and when confronted by the patient, with evidence to the contrary, they became upset, and in some cases, virtually infuriated. That attitude, (don't mess with me, 'cause I'm God), of course, does nothing to help the patient resolve her or his MC issues. Also, he would probably be mad as a wet hen, if you were to ever tell him that you are on a diet which avoids all your trigger foods.
And, IMO, he is completely misguided on his recommended maintenance course of Prednisone. I would never, ever, allow a doctor to talk me into doing that. Prednisone can be safely used, in a short-term treatment program, (when properly done), but if you have any questions about the dangers of long-term use of Prednisone, there are a number of posts in the archives, about the risks of long-term use, and the horrors of trying to withdraw from Prednisone.
Arguably, the best choice of a maintenance drug to use, on a long-term basis, is Entocort. It does not have the draconian side effect risks of Prednisone, (since it's not a systemic), and it only begins to activate after reaching the lower third of the small intestine, and the colon. There are a number of members here who can attest to it's effectiveness at one-third of the daily dose that you are taking, (or even less). Still, after your gut heals, a proper diet, (free of all your trigger foods), should be adequate to control your symptoms, (without any meds), unless you have an unusually severe case.
When ending a treatment program based on the use of Entocort, (as your doctor is suggesting), the day of reckoning will usually arrive by the eighth week after the treatment is terminated. IOW, if you are still D-free, after eight weeks without Entocort, you are probably out of the woods, and will be able to maintain remission indefinitely, (unless, of course, something rocks the boat).
I suppose it's possible that you might have reacted to something you ate, even though you are taking Entocort. It seems that some MC patients are so sensitive, that Entocort will not necessarily handle an "indiscretion" in the diet, whereas others can eat anything they please, and the Entocort will shield them from a "reaction". We are all different, in many aspects.
Regarding the rice cake: at one time, "other natural flavors" would have been highly suspect, but since the new labeling law went into effect on January 1, 2oo6, ingredients such as gluten, soy, casien, yeast, and eggs, cannot be hidden in them. In the United States, maltodextrin can be legally made from corn, potatoes, and/or rice. It is almost always made from cornstarch. It can also be made from wheat, but if it is, the name "wheat" will have to appear on the label, next to that ingredient.
A few of us have had problems with peanut and/or almond butter. I couldn't eat them without problems, for several years, while my gut was healing, but now I can handle them, (sort of - I don't get D, but they make me feel as thought I have an upset stomach, for a few hours, if I eat a significant amount).
If I read your post correctly, you will continue to take Entocort at the full normal dosage rate, for another month. Like all the corticosteroids, it has to be gradually withdrawn from, so that means that after a month, he will schedule you for a gradually reduced dosage rate, over a period of several weeks, so that you can slowly phase it out.
I have a "gut" feeling that he is not leaving you on the Entocort treatment program long enough, to allow your gut to heal. Six months seems to be a reasonable minimum treatment period for budesonide, according to our experience, if my memory isn't playing tricks on me. Of course, I'm no doctor, so please remember that nothing I have said here is backed by either a medical degree, or a white coat. It's just my opinion, based on my own experience, and the experience of others.
Thanks for the update, and I wish you continued good luck with your treatment program.
Tex
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kate_ce1995
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Way to go, Gloria! 
Isn't it wonderful to be on the mend?
I agree with Tex - Entocort should be considered first for a maintenance medication. It does not have the serious systemic effects (osteoporosis, cataracts, etc.) of prednisone because over 90% of it never leaves the gut.
Since we have the same genetic pattern, I would guess that you ARE going to be "that sensitive" to certain things, unfortunately. Don't forget, peanuts and other legumes contain lectins, which are know to increase the "leakiness" of the gut.
Other things to which I am sensitive (that you may want to keep a close eye on) are tomatoes, peppers, eggplant (actually, all of the nightshades except potatoes), chocolate, carrageenan, citrus fruits, corn, rice. I can eat small amounts of these foods if I rotate them - i.e. wait 3-4 days before eating them again. But even then I still notice a slightly less firm BM.
Again, congrats on your progress. I am thrilled for you!
Love,
Polly
Isn't it wonderful to be on the mend?
I agree with Tex - Entocort should be considered first for a maintenance medication. It does not have the serious systemic effects (osteoporosis, cataracts, etc.) of prednisone because over 90% of it never leaves the gut.
Since we have the same genetic pattern, I would guess that you ARE going to be "that sensitive" to certain things, unfortunately. Don't forget, peanuts and other legumes contain lectins, which are know to increase the "leakiness" of the gut.
Other things to which I am sensitive (that you may want to keep a close eye on) are tomatoes, peppers, eggplant (actually, all of the nightshades except potatoes), chocolate, carrageenan, citrus fruits, corn, rice. I can eat small amounts of these foods if I rotate them - i.e. wait 3-4 days before eating them again. But even then I still notice a slightly less firm BM.
Again, congrats on your progress. I am thrilled for you!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I told my GI that I don't want to go on Prednisone. He said it would be a very small dose, which is still not acceptable. I'm hoping to convince him to keep me on Entocort for a while longer to give me enough time to completely heal. Tex, I didn't realize it could take up to 6 months. That's helpful to know. I'm glad to know that it will take about 8 weeks after I stop taking it to determine if my diet is working.
Oh, Polly, I hope I'm not intolerant to chocolate. It's my one and only comfort food. I have to admit that I eat two small pieces (soy and milk-free now) each and every day. BTW - I've been using Ghee for a little buttery flavor on some things. It's butter with the casien removed. It tastes great!
Oh, Polly, I hope I'm not intolerant to chocolate. It's my one and only comfort food. I have to admit that I eat two small pieces (soy and milk-free now) each and every day. BTW - I've been using Ghee for a little buttery flavor on some things. It's butter with the casien removed. It tastes great!
You never know what you can do until you have to do it.
Gloria,
FYI, some of us have had problems with Ghee. It is claimed to be casein free, (and maybe it is, for all I know, but it made me react). It is simply clarified butter, (boiled butter), which has been passed through a filter, (often just an ordinary cloth), to supposedly strain out the casein.
As separation processes go, straining is a very imperfect process, since there is a limit to the minimum size particle that will be removed, depending on the choice of weave pattern in the cloth. Ghee is a very old product, so it is made by very old, traditional methods, which were developed before more sophisticated technology came along.
It was originally developed for religious purposes, to allow the use of "dairy-free" butter, in religious that did not condone the ingestion of animal products. However, it's only ingredient is whole butter, which is then boiled and subsequently strained to remove the solids. There are no additives, so what else could it be, but butter? Note that this is just my own personal opinion, and with all due respect to the religions in which it is used, if it quacks like a duck, etc.
FWIW, chocolate has never bothered me, (except maybe in the weight department, LOL), as long as it was not milk chocolate, and like most of us who were forced to restrict out diets in order to heal, chocolate, and an occasional piece of maple candy, were my only treats for several years, while I was healing. I usually ate it, (the chocolate), in the form of GF chocolate chip cookies.
Tex
FYI, some of us have had problems with Ghee. It is claimed to be casein free, (and maybe it is, for all I know, but it made me react). It is simply clarified butter, (boiled butter), which has been passed through a filter, (often just an ordinary cloth), to supposedly strain out the casein.
As separation processes go, straining is a very imperfect process, since there is a limit to the minimum size particle that will be removed, depending on the choice of weave pattern in the cloth. Ghee is a very old product, so it is made by very old, traditional methods, which were developed before more sophisticated technology came along.
It was originally developed for religious purposes, to allow the use of "dairy-free" butter, in religious that did not condone the ingestion of animal products. However, it's only ingredient is whole butter, which is then boiled and subsequently strained to remove the solids. There are no additives, so what else could it be, but butter? Note that this is just my own personal opinion, and with all due respect to the religions in which it is used, if it quacks like a duck, etc.
FWIW, chocolate has never bothered me, (except maybe in the weight department, LOL), as long as it was not milk chocolate, and like most of us who were forced to restrict out diets in order to heal, chocolate, and an occasional piece of maple candy, were my only treats for several years, while I was healing. I usually ate it, (the chocolate), in the form of GF chocolate chip cookies.
Tex