It's MC. The lady at the doc's office said the pathologist didn't distinguish whether it was CC or LC. I guess the treatment's the same regardless, but I'm quite curious.
Doc wants to start me on Entocort. What do you think? I know very little about this drug. I'm the type that likes to not be on meds if I don't have to. I've had this in pretty good remission with diet once before. Should I try diet first and add the entocort if the diet alone doesn't do it at first? How do you know when to wean off? Are there any long term dangers of using this semi-short term?
Thanks all! I've really appreciated your support thru all this.
Results are back
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I am trying diet only and it is getting very trying. 
Do a search of this site (Potty People) for Entocort to see the experiences of the people who have tried it. There is an entire spectrum from success to adverse reactions.
Do a search of this site (Potty People) for Entocort to see the experiences of the people who have tried it. There is an entire spectrum from success to adverse reactions.DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome manonash!
If you've had remission with diet before, then I would try the diet first. You have nothing to lose by trying it. If the diet doesn't help, then go on the Entocort. I was on Entocort for about 16 months and had no problems with it.
Gloria
If you've had remission with diet before, then I would try the diet first. You have nothing to lose by trying it. If the diet doesn't help, then go on the Entocort. I was on Entocort for about 16 months and had no problems with it.
Gloria
You never know what you can do until you have to do it.
No drug is risk free, but Entocort is one of the safest treatments for MC, and one of the most effective.
If you get a copy of the pathologist's report, you can see for yourself, what your markers were, and how he or she interpreted them.
The diet won't do it "at first". It usually takes around six months or so for the diet to work, because the damage to the gut has to heal, before you will begin to see the D come to an end. Entocort usually works faster. Some members do both, and then wean off the Entocort after about six months, or so, depending on when they see remission.
Tex
If you get a copy of the pathologist's report, you can see for yourself, what your markers were, and how he or she interpreted them.
The diet won't do it "at first". It usually takes around six months or so for the diet to work, because the damage to the gut has to heal, before you will begin to see the D come to an end. Entocort usually works faster. Some members do both, and then wean off the Entocort after about six months, or so, depending on when they see remission.
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.
Thanks so much for the support. I'm so glad I found this forum! I'm expecting my results from Enterolab soon. I'll probably call and have them add another panel now to include the eggs and stuff. I did the gliadin/dairy genetic one.
Is the Entocort a problem if I have adrenal fatigue? I'm planning on ordering the test for that soon, but seem to fit the profile. Not sure how much of those symptoms were the MC, or if MC causes adrenal fatigue so it's both. I also have a toddler and she and her cousins bring around all sorts of viral stuff.
The diet that worked for me was the Specific Carbohydrate Diet. The first time, I was pain free in 3days. The second time I tried it, the was pain was better, but the fatigue was worse and I just didn't seem to respond as well. I'm assuming because the MC had progressed for 2 1/2 more years and I probably had food sensitivities that were legal on the diet (especially dairy). D has never been much of a symptoms for me, so can't gauge my response to something by that. Up until now I haven't had much diarrhea. But, my first BM since the colonoscopy was this morning and it was a doozy! I've never had that happen unless I was sick. In fact, I may be, but don't know.
I'll have to go thru the hospital itself to get the path report right? I asked the nurse what the path report said and she said it didn't say anything specific; do the doc's offices not get the complete report?
Is the Entocort a problem if I have adrenal fatigue? I'm planning on ordering the test for that soon, but seem to fit the profile. Not sure how much of those symptoms were the MC, or if MC causes adrenal fatigue so it's both. I also have a toddler and she and her cousins bring around all sorts of viral stuff.
The diet that worked for me was the Specific Carbohydrate Diet. The first time, I was pain free in 3days. The second time I tried it, the was pain was better, but the fatigue was worse and I just didn't seem to respond as well. I'm assuming because the MC had progressed for 2 1/2 more years and I probably had food sensitivities that were legal on the diet (especially dairy). D has never been much of a symptoms for me, so can't gauge my response to something by that. Up until now I haven't had much diarrhea. But, my first BM since the colonoscopy was this morning and it was a doozy! I've never had that happen unless I was sick. In fact, I may be, but don't know.
I'll have to go thru the hospital itself to get the path report right? I asked the nurse what the path report said and she said it didn't say anything specific; do the doc's offices not get the complete report?
The corticosteroids, (including Entocort), will tend to "take over" the job that the adrenals normally do, and long term use of Prednisone can itself cause adrenal fatigue. I would assume that at the very least, Entocort would skew the results of adrenal testing. Your doctor should be able to judge whether or not it's use will preclude effective adrenal testing. Entocort suppresses the immune system, so it will make you somewhat more susceptible to viruses, and bacterial infections.
I would think that your doctor would have received a complete path report, but maybe that is reserved for GI docs, and GPs receive a "dumbed-down" report, instead. I really don't know. If your doctor can't, (or won't provide you with a copy of the official pathology report, you can request it from the Records Department at the hospital. My hospital calls it the "Release of Records Department", but YMMV. Usually, a copy of a report is free to the patient, and her/his doctors, but anyone else has to pay a fee. You probably will need to sign a form to get the report, (you need to know the date of the test, etc.), but I have always been able to pick up a copy at the time I submit the form, IOW, on the spot, while I am in their office.
Tex
I would think that your doctor would have received a complete path report, but maybe that is reserved for GI docs, and GPs receive a "dumbed-down" report, instead. I really don't know. If your doctor can't, (or won't provide you with a copy of the official pathology report, you can request it from the Records Department at the hospital. My hospital calls it the "Release of Records Department", but YMMV. Usually, a copy of a report is free to the patient, and her/his doctors, but anyone else has to pay a fee. You probably will need to sign a form to get the report, (you need to know the date of the test, etc.), but I have always been able to pick up a copy at the time I submit the form, IOW, on the spot, while I am in their office.
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.