HAH! I knew that title would get your attention! It stands for "KEEP IT SIMPLE, STUPID"! Actually, I was inspired by Tex’ comments in his post to Donna this morning to come up with a list of “rules” about MC that I’d love to send out to all GI docs. So without further ado, here is my KISS for GI docs regarding MC, also known as "What We Wish Our GI Docs Knew About MC".
1. Suffering from diarrhea 24/7 is a life-altering experience. It is NOT a “minor inconvenience”, nor is it something anyone would wish to “live with”.
2. Every colonoscopy MUST include multiple biopsies from various areas of the colon.
3. A diagnosis of Irritable Bowel Syndrome (IBS) cannot be made without multiple biopsies of the colon that rule out MC.
4. MC can affect anyone…..from toddlers to pregnant women to seniors. Even dogs have been diagnosed with MC and prescribed Entocort!
5. Fiber does not help MC.
6. MC does not “go away” or resolve after a few months. However, its symptoms can be managed successfully over the long-term with diet or medication or both.
7. MOST with MC also have food intolerances, primarily gluten, but often other intolerances like dairy, soy, yeast, etc.
8. The gluten sensitivity that goes along with MC is NOT picked up by the classic tests for celiac disease (endoscopy as well as blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe an intolerance as it is in celiac disease.
9. Entocort must often be used longer-term than the literature would indicate………up to a year and even longer if an elimination diet is not being followed. Also, it must be maintained for longer periods before it is tapered.
10. The research, lab tests, and recommendations that have been most helpful to those with MC to date are from Dr. Kenneth Fine (www.finerhealth.com).
I realize that we are all different and that there are exceptions to these "rules". However, wouldn't it be super if all GI docs had at least this basic info? Please feel free to add to this list. I'm sure there are lots more rules I haven't addressed.
Love,
Polly
A KISS for OUR GI DOCS!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
A KISS for OUR GI DOCS!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly great post, only I have one question what you wrote about entocort: "up to a year and even longer if an elimination diet is not being followed". Can't you even say in case of no diet, patients never will get symptom free, as soon as they quite entocort the D will be back sooner or later? Or I am seeing this wrong?
Hi Harma,
Are you watching the World Cup? Good luck to your country!
I know what you are saying, but I'm not sure we have enough evidence yet to know for sure that one can never come off of Entocort without also using diet. That may very well be the case, but time will tell for sure. I know that, with diet, some have needed Entocort for 6 mo. to a year at least before being able to stop it and go with diet alone. I think the jury is still out. It may be that for some very recalcitrant cases, Entocort must be continued indefinitely, even with diet. We'll have to continue to monitor this here.
Gabes, great idea!!! I am going to run this by my GI doc and will let you know what she says. Tee Hee. I will remind her that this website has the world's largest collection of MCers in one place, so our experience should count for something, right?
Love,
Polly
Are you watching the World Cup? Good luck to your country!
I know what you are saying, but I'm not sure we have enough evidence yet to know for sure that one can never come off of Entocort without also using diet. That may very well be the case, but time will tell for sure. I know that, with diet, some have needed Entocort for 6 mo. to a year at least before being able to stop it and go with diet alone. I think the jury is still out. It may be that for some very recalcitrant cases, Entocort must be continued indefinitely, even with diet. We'll have to continue to monitor this here.
Gabes, great idea!!! I am going to run this by my GI doc and will let you know what she says. Tee Hee. I will remind her that this website has the world's largest collection of MCers in one place, so our experience should count for something, right?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Polly and Harma. I have been on Entocort 9mg AM dosing for roughly 3 months now and have been following a strict paleo diet GF/DF/SF and very low yeast and as posted a couple of weeks ago I was not ready to stop the Entocort. After a reduction to 6mg for 4 days, resulted in a significant flare. I have to admit I was looking forward to not taking the pills each day and was hoping that the diet would expedite the process of healing with the meds; but I am learning to treat this disease with patience.
I am wondering how much does the SB involvement with Crohns make the symptoms and Entocort withdrawal harder to tolerate.
--Joe
I am wondering how much does the SB involvement with Crohns make the symptoms and Entocort withdrawal harder to tolerate.
--Joe
Joe
No, I am the only person in the whole country not watching 
I have no tele. But even without a tele, it is impossible to ignore. It is orange everywhere and if something exciting happens (good or bad) people cheer or shout ooooeeh and aaaahhh and oooohhhh.
I understand what you are saying about no diet and entocort. Maybe next time I visit my GI I will bring it and take some copies for his collegues.
I have no tele. But even without a tele, it is impossible to ignore. It is orange everywhere and if something exciting happens (good or bad) people cheer or shout ooooeeh and aaaahhh and oooohhhh. I understand what you are saying about no diet and entocort. Maybe next time I visit my GI I will bring it and take some copies for his collegues.
-
wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Polly, I love your post dated July 11, 2010.
For the longest time I felt there was a need for a short informative article similar to what you just wrote that we could print out and give to our doctors. I would like to hear what the others have to say regarding such an article. I think this is a good start. I would think that between you and Tex you two could come up with something for our doctors.
Polly writes
I feel number 3 needs to mention Lymphocytic Colitis & Collagenous Colitis come under the umbrella of Microscopic Colitis and spelled out, not abbreviated. I don’t know if I worded that right, but hope you understand.
And I also feel number 6 should indicate not just diet but a gluten free diet, and then emphasis that many have obtained results with just a gluten free diet.
11. I realize that everyone is different and that there are exceptions to these "rules".
Soy and Dairy should be addressed also.
Doctors are also going to want to know where this information came from. They may think they are the crazy ideas of the patient. I doubt that you would want your name on it so maybe you need to conclude with something like
This basic information has been proven by the world's largest collection of MCers in one place, their experience should count for something.
I also feel these sites are a more direct link than the one given.
http://www.finerhealth.com/Educational_ ... c_Colitis/
http://www.finerhealth.com/Educational_ ... nsitivity/
http://www.finerhealth.com/Educational_Info/Nutrition/
I am not good at writing but I am confident that someone here can come up with something for our doctors.
For the longest time I felt there was a need for a short informative article similar to what you just wrote that we could print out and give to our doctors. I would like to hear what the others have to say regarding such an article. I think this is a good start. I would think that between you and Tex you two could come up with something for our doctors.
Polly writes
Please feel free to add to this list. I'm sure there are lots more rules I haven't addressed.
I feel number 3 needs to mention Lymphocytic Colitis & Collagenous Colitis come under the umbrella of Microscopic Colitis and spelled out, not abbreviated. I don’t know if I worded that right, but hope you understand.
And I also feel number 6 should indicate not just diet but a gluten free diet, and then emphasis that many have obtained results with just a gluten free diet.
11. I realize that everyone is different and that there are exceptions to these "rules".
Soy and Dairy should be addressed also.
Doctors are also going to want to know where this information came from. They may think they are the crazy ideas of the patient. I doubt that you would want your name on it so maybe you need to conclude with something like
This basic information has been proven by the world's largest collection of MCers in one place, their experience should count for something.
I also feel these sites are a more direct link than the one given.
http://www.finerhealth.com/Educational_ ... c_Colitis/
http://www.finerhealth.com/Educational_ ... nsitivity/
http://www.finerhealth.com/Educational_Info/Nutrition/
I am not good at writing but I am confident that someone here can come up with something for our doctors.
Polly, I love your KISS points. The only thing I might think to add is a mention of Enterolab as a legitimate way to test for gluten and other food sensitivities.
Maybe we could all print your KISS out (but name it something different) to take to our doctor's appointments, like some of us print out instructions for the chef when we dine out!
Rosie
Maybe we could all print your KISS out (but name it something different) to take to our doctor's appointments, like some of us print out instructions for the chef when we dine out!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Great list Polly. It should definitely have a permanent place on this board to print out for newbies and for those of us who are working hard to obtain remission. I think it would help us gain the support we need from the medical community especially if they knew the author was a dr with the disease (and now has no signs of it!) Thanks, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne