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When I joined this board about one year ago, I found a neat list to describe MC and how one feels, to his or her doctor. Does anyone remember this posting and where I can find it again?
Thx
Rich
List of "truisms" for MC for one's doctor
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
List of "truisms" for MC for one's doctor
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
Could it be this?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=305
Or this?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=201d
Tex
Could it be this?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=305
Or this?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=201d
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,
Not those. It was more of a lighthearted but serious shopping list of symptoms to give to one's doctor to make them more empathetic. It was numbered, I think, 1 through 12. I recall one of the items mentioning how we do not take for granted being near a bathroom. I can't recall who posted it, and used to have a copy of it on my refrigerator. I want to give it to my office manager because I think it will clearly describe to her how I feel, my anxieties, etc. It was a document that puts the doctor, or attempts to, in our shoes.
Does that ring a bell? Appreciate the help.
BTW, I have been doing (don't want to jinx it) pretty well. Am taking no meds, finished about 8 physical therapy sessions for PFD, and am eating GF, DF, and SF. Was curious how Polly describes her morning bowel activities now that she has no pathological sign of MC. Has her function truly returned to her pre-MC condition in all respects?
So how have you been doing? You previously mentioned a large project that was consuming most of your time work-wise. Are you still in the midst of that? The reason I am asking is because I will be in Denton, TX the week after next (flying through DFW). If our schedules can accommodate it, I would enjoy meeting you to thank you in person for all your help. I will make my schedule accommodate it if you are available. I see Salado is south of the Airport but it would also give me an excuse to drive to Austin to visit a client.
Regards,
Rich
Not those. It was more of a lighthearted but serious shopping list of symptoms to give to one's doctor to make them more empathetic. It was numbered, I think, 1 through 12. I recall one of the items mentioning how we do not take for granted being near a bathroom. I can't recall who posted it, and used to have a copy of it on my refrigerator. I want to give it to my office manager because I think it will clearly describe to her how I feel, my anxieties, etc. It was a document that puts the doctor, or attempts to, in our shoes.
Does that ring a bell? Appreciate the help.
BTW, I have been doing (don't want to jinx it) pretty well. Am taking no meds, finished about 8 physical therapy sessions for PFD, and am eating GF, DF, and SF. Was curious how Polly describes her morning bowel activities now that she has no pathological sign of MC. Has her function truly returned to her pre-MC condition in all respects?
So how have you been doing? You previously mentioned a large project that was consuming most of your time work-wise. Are you still in the midst of that? The reason I am asking is because I will be in Denton, TX the week after next (flying through DFW). If our schedules can accommodate it, I would enjoy meeting you to thank you in person for all your help. I will make my schedule accommodate it if you are available. I see Salado is south of the Airport but it would also give me an excuse to drive to Austin to visit a client.
Regards,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
I think I know what you mean. Let me go search for it.
To answer your question, I now have completely normal bowel habits. I could not say this until I did the MRT in Jan. and eliminated additional foods that I had not previously identified. IOW, I still did not have completely normal bowel function even in the face of a normal biopsy - it was OK most of the time but not every single day like now. I never would have guessed the certain seemingly "benign" foods I was sensitive to (yellow squash, cucumber, carrots, lamb, etc.) without the MRT.
Good to hear that your MC seems to be behaving!
Love,
Polly
I think I know what you mean. Let me go search for it.
To answer your question, I now have completely normal bowel habits. I could not say this until I did the MRT in Jan. and eliminated additional foods that I had not previously identified. IOW, I still did not have completely normal bowel function even in the face of a normal biopsy - it was OK most of the time but not every single day like now. I never would have guessed the certain seemingly "benign" foods I was sensitive to (yellow squash, cucumber, carrots, lamb, etc.) without the MRT.
Good to hear that your MC seems to be behaving!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Is this it?
My KISS (keep it simple, stupid) for GI docs regarding 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 several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.
7. Almost ALL with MC also have food sensitivities, primarily gluten, but often other foods 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, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown 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 date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.
I see I need to add a #11:
11. For those with multiple food sensitivities who test positive to most of the enterolab tests, the MRT (mediated release test) can be a helpful tool for identifying additional sensitivities and fine-tuning the diet.
Hugs,
Polly
My KISS (keep it simple, stupid) for GI docs regarding 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 several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.
7. Almost ALL with MC also have food sensitivities, primarily gluten, but often other foods 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, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown 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 date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.
I see I need to add a #11:
11. For those with multiple food sensitivities who test positive to most of the enterolab tests, the MRT (mediated release test) can be a helpful tool for identifying additional sensitivities and fine-tuning the diet.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
That's it!!!!!! Thanks so much.
Glad to hear your function is now normal too. I feel I have made good progress but with ongoing PFD, I don't expect to get back to where I once was. Plus, I don't think I will ever be able to simply cook for myself and will get the occasional "poisoning" from restaurants. But I do feel I am heading in the right direction.
Thanks again!
Rich
That's it!!!!!! Thanks so much.
Glad to hear your function is now normal too. I feel I have made good progress but with ongoing PFD, I don't expect to get back to where I once was. Plus, I don't think I will ever be able to simply cook for myself and will get the occasional "poisoning" from restaurants. But I do feel I am heading in the right direction.
Thanks again!
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Hi Rich,
Other than the drought and hot weather taking it's toll, I'm doing OK, as best I can tell. I've got most of that earlier project completed, but now I'm loading last year's corn crop out of storage onto trucks, so my schedule is pretty much determined by when the trucks show up. The way the weather's going this year, if we don't get substantial rains pretty dang soon, there won't be a corn crop around here this year, and there's nothing in the forecast that looks promising, for the next week or so. The corn is over knee high, but it's rapidly running out of water.
It's nice to hear that you're doing so much better.
Tex
Other than the drought and hot weather taking it's toll, I'm doing OK, as best I can tell. I've got most of that earlier project completed, but now I'm loading last year's corn crop out of storage onto trucks, so my schedule is pretty much determined by when the trucks show up. The way the weather's going this year, if we don't get substantial rains pretty dang soon, there won't be a corn crop around here this year, and there's nothing in the forecast that looks promising, for the next week or so. The corn is over knee high, but it's rapidly running out of water.
It's nice to hear that you're doing so much better.
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.
-
Gabes-Apg
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rich
that is fantastic news that you are having hardly any meds and you are doing ok! that is awesome. how are you going with GF DF SF on the road? i think i read in Karis thread that you stick to meat and well cooked veg.
Since doing the BIA (my MRT equiv) and fine tuning my eating plan my BM's have been mostly normal alot more of the time.
Hope your wellness continues to improve
take care
that is fantastic news that you are having hardly any meds and you are doing ok! that is awesome. how are you going with GF DF SF on the road? i think i read in Karis thread that you stick to meat and well cooked veg.
Since doing the BIA (my MRT equiv) and fine tuning my eating plan my BM's have been mostly normal alot more of the time.
Hope your wellness continues to improve
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex,
Wish I could send some Indiana rain your way. What a strange spring. A little bit of balance across the north and the south would be nice. We are hunkering down tonight again due to weather.
Gabes,
Yep, I'm doing pretty well med free. And yes, lots of meats, eggs, cooked veggies, potato, and sweet tea. I eat breakfast a lot for most of my meals on the road. Now I just gotta get back in the swimming pool and get my cardio going. I also started a multi vitamin a few weeks ago. Placebo? Who knows. But I am having more good days than bad and I don't feel so toxic either. Glad to hear of your progress too.
I am so fortunate to have found an office manager who also eats right, and helps to keep the rest of us on track. Good stuff.
Going to Vegas next week to teach a couple courses but I should be fine eating-wise.
Say hi to Joe for me.
Rich
Wish I could send some Indiana rain your way. What a strange spring. A little bit of balance across the north and the south would be nice. We are hunkering down tonight again due to weather.
Gabes,
Yep, I'm doing pretty well med free. And yes, lots of meats, eggs, cooked veggies, potato, and sweet tea. I eat breakfast a lot for most of my meals on the road. Now I just gotta get back in the swimming pool and get my cardio going. I also started a multi vitamin a few weeks ago. Placebo? Who knows. But I am having more good days than bad and I don't feel so toxic either. Glad to hear of your progress too.
I am so fortunate to have found an office manager who also eats right, and helps to keep the rest of us on track. Good stuff.
Going to Vegas next week to teach a couple courses but I should be fine eating-wise.
Say hi to Joe for me.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich, this is wonderful to hear - it seems like just a couple of weeks ago you were considering Rx options. And here you are free of meds and sounding terrific. YAY!
Now you just have to work on getting Tex some of that rain...
All my best, and thanks for bringing this list to my attention. I'll definitely add it to my "talking points" file for doctor visits.
(Polly, you've convinced me more than ever that I need to proceed to MRT - not sure how to do that, but will be looking to find a LEAP certified pro in NYC who can guide me through it.)
Love,
Sara
Now you just have to work on getting Tex some of that rain...
All my best, and thanks for bringing this list to my attention. I'll definitely add it to my "talking points" file for doctor visits.
(Polly, you've convinced me more than ever that I need to proceed to MRT - not sure how to do that, but will be looking to find a LEAP certified pro in NYC who can guide me through it.)
Love,
Sara
Sara,
I still carry my emergency meds, and even some alldaychemist entocort, but all in all, I never felt the drugs were helping me any more than I could help myself. I have really matured emotionally as person over the last year. It took me a while to accept my diagnosis. I even had it verified by a university specialist.
Once I went through all those processes, and having spent a ton of money doing, I decided enough was enough and proceeded to simplify my diet. I still flare on occasion but much less frequently. Basically, I started to really listen to the wisdom of this board and to implement the wise recommendations.
Aprpreciate the support. Will start building a water pipeline from the midwest to Tex tomorrow :)
Rich
I still carry my emergency meds, and even some alldaychemist entocort, but all in all, I never felt the drugs were helping me any more than I could help myself. I have really matured emotionally as person over the last year. It took me a while to accept my diagnosis. I even had it verified by a university specialist.
Once I went through all those processes, and having spent a ton of money doing, I decided enough was enough and proceeded to simplify my diet. I still flare on occasion but much less frequently. Basically, I started to really listen to the wisdom of this board and to implement the wise recommendations.
Aprpreciate the support. Will start building a water pipeline from the midwest to Tex tomorrow :)
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
What a great report, Rich! You sound at peace with your MC, and that seems to have given you the fortitude to manage it with diet. I'm pretty impressed that you are doing well without meds. Do you even take Imodium? It looks like it's been recalled, but I can't find anything definitive.
Gloria
Gloria
You never know what you can do until you have to do it.
Sara,
Here are a few names of dietitians near NYC. Not sure if you are aware but NY has some funky laws about sending lab draws out of state, so you may need to go to New Jersey or CT.
Jill Knopoff 203.550.4386
Stephanie Song 201-310-1752
Rich,
Great news - I hope the diet continues to help manage your MC.
Mary Beth
Here are a few names of dietitians near NYC. Not sure if you are aware but NY has some funky laws about sending lab draws out of state, so you may need to go to New Jersey or CT.
Jill Knopoff 203.550.4386
Stephanie Song 201-310-1752
Rich,
Great news - I hope the diet continues to help manage your MC.Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer