At my recent GI appointment, I inquired about Entocort. He admitted to not being an expert on colitis/celiac issues, and was hesitant to prescribe Entocort because it is only effective up to the ascending colon. GI referred me to Shands Jacksonville Medical Center (affiliated with UF) and if they recommend Entocort he's all for it. Does anyone have inflammation downstream of the ascending colon (transverse, descending, sigmoid, rectum) that has been helped by Entocort?
I appreciate any info!
Does Entocort work throughout the colon?
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Hi Marie,
I'm puzzled by your doctors statement. Apparently he's quite confused. Why on earth would he reach such a silly conclusion? Entocort EC has an enteric coating which prevents it from being activated until it reaches the lower third of the small intestine (the ileum), and the colon. But just because the drug is activated in the ileum and the ascending colon does not imply that it will somehow be prevented from being allowed to travel downstream. The only "gates" in the colon are located at the cecum (between the ileum and the colon) and at the anal sphincter. Once a fluid passes the cecum, there is nothing to stop it from proceeding downstream to the distal end. Why on earth would he assume that Etocort will not treat downstream sections of the colon?
That said, it is true that the drug is most effective where it is first activated, but as a matter of fact, the terminal ileum and the ascending colon is where the inflammation that causes MC is normally the most concentrated, so Entocort typically provides a very effective distribution pattern for treating MC. Virtually everyone with MC has randomly-distributed splotches of inflammation scattered over not only their entire colon, but also over most of their small intestine, and in many cases the stomach and esophagus as well. There is no perfect drug treatment for MC, but Entocort EC is as good as it gets, and it has been used to treat many thousands of MC patients. So why on earth would he question it's efficacy? I wonder if you might be his first MC patient.
He really needs to brush up on his treatment skills if he's going to treat patients and charge real money for his services.
Tex
I'm puzzled by your doctors statement. Apparently he's quite confused. Why on earth would he reach such a silly conclusion? Entocort EC has an enteric coating which prevents it from being activated until it reaches the lower third of the small intestine (the ileum), and the colon. But just because the drug is activated in the ileum and the ascending colon does not imply that it will somehow be prevented from being allowed to travel downstream. The only "gates" in the colon are located at the cecum (between the ileum and the colon) and at the anal sphincter. Once a fluid passes the cecum, there is nothing to stop it from proceeding downstream to the distal end. Why on earth would he assume that Etocort will not treat downstream sections of the colon?
That said, it is true that the drug is most effective where it is first activated, but as a matter of fact, the terminal ileum and the ascending colon is where the inflammation that causes MC is normally the most concentrated, so Entocort typically provides a very effective distribution pattern for treating MC. Virtually everyone with MC has randomly-distributed splotches of inflammation scattered over not only their entire colon, but also over most of their small intestine, and in many cases the stomach and esophagus as well. There is no perfect drug treatment for MC, but Entocort EC is as good as it gets, and it has been used to treat many thousands of MC patients. So why on earth would he question it's efficacy? I wonder if you might be his first MC patient.
He really needs to brush up on his treatment skills if he's going to treat patients and charge real money for his services.
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 Marie,
I find it most disturbing that your GI doctor is not an expert for colitis or celiac disease! That should be an area where he/she has expertise!
Hope that you get more information in Jacksonville.
I am fairly new here. I am on Entocort, but hope that someday I can control it all with diet.
Good luck on your journey back to health. You will get lots of support and good medical information from this group,
Marion
I find it most disturbing that your GI doctor is not an expert for colitis or celiac disease! That should be an area where he/she has expertise!
Hope that you get more information in Jacksonville.
I am fairly new here. I am on Entocort, but hope that someday I can control it all with diet.
Good luck on your journey back to health. You will get lots of support and good medical information from this group,
Marion
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MaggieRedwings
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Morning Marie,
Well in my opinion, I would say another GI bites the dust! Time to find someone who has more expertise in our disease - know they are few and far between but hopefully, Jacksonville will hold the answers for you. Entocort is the most effective drug and if you can use it, fight for a script.
Maggie
Well in my opinion, I would say another GI bites the dust! Time to find someone who has more expertise in our disease - know they are few and far between but hopefully, Jacksonville will hold the answers for you. Entocort is the most effective drug and if you can use it, fight for a script.
Maggie
Maggie Scarpone
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Sheila
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- Location: Palm Beach Gardens, Fl
I live in Palm Beach Gardens, Florida and have an excellent GI doctor. I was going to post about my visit with him yesterday anyway and this is a perfect opportunity to let you know that there are doctors in Florida who are competent and willing to go the extra mile and learn about MC. If you live anywhere near Dr. Bernie Stein in Jupiter, Florida I would recommend him highly.
He and I have gotten to the point where he believes me when I tell him about the connection between diet and MC symptoms and, judging from our discussion yesterday, he has done some research himself. I told him about the paleo diet and he agrees that it is worth trying. He no longer talks about taking me off Entocort and instead suggested I try to take it down to one cap every other day. He told me it was up to me to decide if I want to get off the Entocort and try lialda or some other drug in the future. We had discussion about the side effects of steroid use and ways to counter those side effects. I don't have to go back for a year because he is satisfied that I'm managing MC and celiac well. BTW, I used our "norman" word and then had to explain the usage. He laughed and loved it!
If you have a doctor who doesn't know how to treat MC, get another doctor. We have been brainwashed to think that all doctors are smart and know what they are doing. Your doctor could have graduated dead last in his class and you would have no way of knowing.
Sheila W
He and I have gotten to the point where he believes me when I tell him about the connection between diet and MC symptoms and, judging from our discussion yesterday, he has done some research himself. I told him about the paleo diet and he agrees that it is worth trying. He no longer talks about taking me off Entocort and instead suggested I try to take it down to one cap every other day. He told me it was up to me to decide if I want to get off the Entocort and try lialda or some other drug in the future. We had discussion about the side effects of steroid use and ways to counter those side effects. I don't have to go back for a year because he is satisfied that I'm managing MC and celiac well. BTW, I used our "norman" word and then had to explain the usage. He laughed and loved it!
If you have a doctor who doesn't know how to treat MC, get another doctor. We have been brainwashed to think that all doctors are smart and know what they are doing. Your doctor could have graduated dead last in his class and you would have no way of knowing.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Sheila wrote:Your doctor could have graduated dead last in his class and you would have no way of knowing.
Good one!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 Marie,
My experience with GI docs at Shands/UF Gainesville has been average at best. I live local to the Gainesville location, i.e. I could ride my bike there so it wasn't a long drive or anything but I got far more from reading this forum at much cheaper monies. Consider Mayo/Jax if you decide to go to Jacksonville. (I havn't been there personally but my friend's son has been to Mayo Jax as well as numerous GI docs all over North Florida for ulcerative colitis.) My friend's husband got mad at Shands as they did not have toilet paper in the hospital room (twice) when his son was hospitalized at Shands Gainesville with ulcerative colitis.) The Dad spent about 25 minutes trying to get toilet paper for his son. Apparently the GI docs at Mayo are really good at returning patient's emails and the Dad thought the GI docs at Mayo were more on the ball than at Shands plus Mayo always had toilet paper in the rooms.
That being said consider say second opinion local to where you live. I usually find it is more convenient for me if nothing else. I was a 4.5 month Entocort user and it seems to be fairly routinely prescribed around the country. Best wishes, Brandy
My experience with GI docs at Shands/UF Gainesville has been average at best. I live local to the Gainesville location, i.e. I could ride my bike there so it wasn't a long drive or anything but I got far more from reading this forum at much cheaper monies. Consider Mayo/Jax if you decide to go to Jacksonville. (I havn't been there personally but my friend's son has been to Mayo Jax as well as numerous GI docs all over North Florida for ulcerative colitis.) My friend's husband got mad at Shands as they did not have toilet paper in the hospital room (twice) when his son was hospitalized at Shands Gainesville with ulcerative colitis.) The Dad spent about 25 minutes trying to get toilet paper for his son. Apparently the GI docs at Mayo are really good at returning patient's emails and the Dad thought the GI docs at Mayo were more on the ball than at Shands plus Mayo always had toilet paper in the rooms.
That being said consider say second opinion local to where you live. I usually find it is more convenient for me if nothing else. I was a 4.5 month Entocort user and it seems to be fairly routinely prescribed around the country. Best wishes, Brandy
Thanks y'all! I'm in the Tampa Bay area, so sending me to Shands UF @ Jacksonville for treatment seems absurd. MY GI studied @ Duke University (undergrad) and The University of Maryland for Medicine, so I naively thought he must be an expert. I obviously need a new doc. I realize I can order Entocort online but I want a doctor who understands LC/celiac disease to oversee my treatment. It's baffling that it can be so hard to find a great gastroenterologist in this day and age. It's not like I live out in sticks!!! No offense to those whom do, I was raised in a small country town. 
Thanks again for the support!
Thanks again for the support!Hi Marie,
I laughed at your post. Perhaps you can get another referral from your PCP or your Psychiatrist to someone in the Tampa area or maybe one of the readers will chime in with someone. I agree....you'd think Duke University/University of Maryland credentials would mean something.......believe me it is not uncommon for us to get GI's who don't "get MC".
Once you've done a certain number of posts you can search the forum's archives which I found helpful. I searched every thread of thread that discussed dizziness which was problematic for me. I think it is perhaps 15 posts but I'm not sure but at some point you can use the search function. Best wishes and we've been really having a great June. It doesn't seem as hot as usual. Brandy
I laughed at your post. Perhaps you can get another referral from your PCP or your Psychiatrist to someone in the Tampa area or maybe one of the readers will chime in with someone. I agree....you'd think Duke University/University of Maryland credentials would mean something.......believe me it is not uncommon for us to get GI's who don't "get MC".
Once you've done a certain number of posts you can search the forum's archives which I found helpful. I searched every thread of thread that discussed dizziness which was problematic for me. I think it is perhaps 15 posts but I'm not sure but at some point you can use the search function. Best wishes and we've been really having a great June. It doesn't seem as hot as usual. Brandy