Overwhelming! Do y'all think I had MC as a kid without diarrhea? I have numerous pictures of me in underpants as a kid sticking a twig at my bloated stomach and some of me popping out of my dress with stomach bloated to the max. No diarrhea. As I got older I also had bloat with no diarrhea. I thought it was weight gain and left it at that. My best friend noted I had a bloated stomach and one radiologist I dated after nursing school noted my bloated stomach. He didn't know anything about MC. He had Parkinson's disease and is now gone. I just thought they were making fun. The bloat has been with me all my life without diarrhea. It only started in Buda, TX.
I think you are right, Tex. NO Gluten is easy compared to MC with everything that makes us sick. Then I listen to Dr. Fine and take his special products - blueberry fiber, probiotics, and it seems to help, but blueberries and blackberries now make me sick. Dr. Fine has MC just like us. He is a warm caring doctor and prayed for me. I do like him. I get bits of information from Dr. Fine and bits of information from Tex's forum. Then I am confused because sometimes they contradict each other. Wayne, I think you are important because you represent hundreds of people with MC! I just wish we could have a symposium and make an impact and wake up GI Specialists. Maybe even have a GI Specialist attend our symposium. That's how we got Dystonia on the map. Doctors became interested and concerned and we had multiple support groups with doctors climbing on board. WE GAINED AWARENESS! I think the same would work with MC! GAIN AWARENESS!
stress and MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dorothy,
I agree, we definitely need something to get gastroenterologist's attention. But currently, medical science ignores dietary treatment of MC. All the money is behind expensive drug treatments. I can cite a couple of studies, but they're specialized groups. Until we can accumulate a large enough war chest to fund a significantly-sized trial using medically-approved methods to verify that a treatment using proper diet restrictions will effectively treat MC in a majority of cases, most gastroenterologists are going to continue to ignore us. It's kind of funny in a sad way — people will freely contribute millions for political candidates to waste, but it's tough to attract any serious money for research to treat MC. Even a small dietary treatment study costs several hundred thousand dollars. Reaching that goal seems like an impossible task, based on past experience.
The medical community is aware of MC, but currently, most of the science (published research) supports the use of drugs. We have to have valid published medical research proving the effectiveness of dietary treatment in order to get their attention.
Tex
I agree, we definitely need something to get gastroenterologist's attention. But currently, medical science ignores dietary treatment of MC. All the money is behind expensive drug treatments. I can cite a couple of studies, but they're specialized groups. Until we can accumulate a large enough war chest to fund a significantly-sized trial using medically-approved methods to verify that a treatment using proper diet restrictions will effectively treat MC in a majority of cases, most gastroenterologists are going to continue to ignore us. It's kind of funny in a sad way — people will freely contribute millions for political candidates to waste, but it's tough to attract any serious money for research to treat MC. Even a small dietary treatment study costs several hundred thousand dollars. Reaching that goal seems like an impossible task, based on past experience.
The medical community is aware of MC, but currently, most of the science (published research) supports the use of drugs. We have to have valid published medical research proving the effectiveness of dietary treatment in order to get their attention.
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.
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And since most medical research funding comes from drug companies the chance of getting the funding to do dietary studies is almost nil.tex wrote:
The medical community is aware of MC, but currently, most of the science (published research) supports the use of drugs. We have to have valid published medical research proving the effectiveness of dietary treatment in order to get their attention.
Tex
Jean
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dolson
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Wayne, we're in a sad state of affairs and a world of hurt. Nothing matters except MONEY! Money and Greed and it's destroying this nation. Look at AIDS, was discovered in the 1990's and is nearly cured. Look at diabetes. It's a Cash Cow and Golden Goose that lays Golden Eggs. A big money maker. The Pharma Companies don't want a cure. They make too much money off us. It's the same for MC! They don't want a cure. Just shove the pills down our throat. I have to give you all the credit TEX, for making a dent in MC! It's madening and SAD! Something has to give before we blow up!
Dorothy,
I completely agree. What we need is a famous celebrity who has MC and doesn't like taking drugs, or someone who's inherited more money than they can use.
Tex
I completely agree. What we need is a famous celebrity who has MC and doesn't like taking drugs, or someone who's inherited more money than they can use.
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.
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dolson
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I agree Tex. Just like dystonia, people, celebs and politician don't want to admit they have dystonia. But I notice it all the time. Robert Muller investigating Trump has tremors of the head and maybe Spasmodic Torticollis and Susan Collins, senator from Maine, and Robert Kennedy, Jr., both have dysphonia where they speak hoarse with tremors. Sam Elliott, the actor, has Spasmodic Torticollis because I've noticed it in his movies of the past. They shot him in certain angles to hide his condition.
Finding somebody well-known in the press would help us tremendously, but won't be easy, but it's doable. Do you think we could have a symposium where we get support and hang with people just like us? We need to know we aren't alone. I know it takes money but do you see it in the future? We all pay to attend and we could try to find a speaker. Dr. Fine could speak to us.
I've done enough with Dystonia, now it's time to tackle MC and WE THE SUFFERERS can take the bull by the horns and Gain Awareness! That's the key!!!!
I'm getting information from Dystonia Medical Research Foundation and they state "STRONG MESSAGE TO CONGRESS, members of Congress regularly hear from the dystonia community through annual appointments on Capitol Hill, visits in district offices, and ongoing correspondence from Dystonia Advocacy Network on issues relevant to the community. Why can't we contact our congress members and make them aware of the lack of knowledge and research for Microscopic Colitis. We need to be Loud and Persistent. We could ask Congress for funding to aid in research. Each year dystonia advocates encourage Congress to increase funding for the NIH and support expansion of the dystonia research portfolio. This sustained outreach has helped funding for dystonia research at NIH reach $14 million annually." Why can't we do the same? Can't we get the ball rolling, Tex? We gotta do something.
Finding somebody well-known in the press would help us tremendously, but won't be easy, but it's doable. Do you think we could have a symposium where we get support and hang with people just like us? We need to know we aren't alone. I know it takes money but do you see it in the future? We all pay to attend and we could try to find a speaker. Dr. Fine could speak to us.
I've done enough with Dystonia, now it's time to tackle MC and WE THE SUFFERERS can take the bull by the horns and Gain Awareness! That's the key!!!!
I'm getting information from Dystonia Medical Research Foundation and they state "STRONG MESSAGE TO CONGRESS, members of Congress regularly hear from the dystonia community through annual appointments on Capitol Hill, visits in district offices, and ongoing correspondence from Dystonia Advocacy Network on issues relevant to the community. Why can't we contact our congress members and make them aware of the lack of knowledge and research for Microscopic Colitis. We need to be Loud and Persistent. We could ask Congress for funding to aid in research. Each year dystonia advocates encourage Congress to increase funding for the NIH and support expansion of the dystonia research portfolio. This sustained outreach has helped funding for dystonia research at NIH reach $14 million annually." Why can't we do the same? Can't we get the ball rolling, Tex? We gotta do something.
We definitely need a good PR representative, but since we can't afford to pay any salaries, finding one who's qualified, yet willing to work on a voluntary basis, is tough.
Sure, at some point we'll need to have a symposium. But again, that requires the talents of someone experienced in organizing and coordinating such events. We all have good intentions, but we're lacking some needed skills and experience.
Tex
Sure, at some point we'll need to have a symposium. But again, that requires the talents of someone experienced in organizing and coordinating such events. We all have good intentions, but we're lacking some needed skills and experience.
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.
https://www.microscopiccolitisfoundation.org/
This is a reminder to everyone to support our microscopic colitis foundation.
This is a reminder to everyone to support our microscopic colitis foundation.
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dolson
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Hi Tex, I understand your concern. I think now every MC sufferer should contact their congressman/congresswoman. My congressman is Buddy Carter, and he covers the coastal region of Georgia, from Florida to South Carolina. Tex, you are close to Austin. That should be an easy trip to see congress. There is around 300,000 people who have dystonia in some form. We have a much higher number of MC Sufferers than 300,000. I knew the day when nobody knew about dystonia, but with awareness, everybody knows about it now. The man that started the ball rolling for dystonia was Howard Thiel. He was an insurance salesman and decided to make a difference. He had the disease and drank to extreme for relief. He suceeded in making a difference for dystonia sufferers. Look at the suffering, the ignorance of endocrinologists who don't have a clue about MC, and the misery of this disease. I think we can get funding from congress to help us and help Dr. Fine and other researchers. I can get things rolling!
I'm ready to get to work. I will speak to my friend in Pennsylvania. She has several dystonia support group meetings each year. The German populaton and Amish have dystonia and it's devasting. When I attended, we had hundreds attend the symposium. I can get help from her. I will be calling Buddy Carter to help obtain funding.
I'm ready to get to work. I will speak to my friend in Pennsylvania. She has several dystonia support group meetings each year. The German populaton and Amish have dystonia and it's devasting. When I attended, we had hundreds attend the symposium. I can get help from her. I will be calling Buddy Carter to help obtain funding.
Yes, I'm only about 50 miles from Austin, so that should be an easy trip to see congress. Except that I'm 77, with plenty of health issues that make travel difficult, and since the stroke, there's no way I could drive in Austin traffic or walk around where I needed to go in the Capitol. The Texas Congress might as well be located on the moon.
We need a good lobbyist, but our 501(c)3 status with the IRS means that we have to be careful how we represent ourselves in politics so that we don't lose our tax free status. Qualified lobbyists (who understand the rules) cost money (which we don't have).
It's tough to make the case that MC is a debilitating disease, when most patients don't look sick, and the medical profession classifies it as a "nuisance disease with a benign course". I've tried to get the attention of a congressman or two, but they just tell me about all the other more worthy causes that they have to fund. Obviously we need a good PR rep, but qualified PR professionals usually expect a good salary.
Tex
We need a good lobbyist, but our 501(c)3 status with the IRS means that we have to be careful how we represent ourselves in politics so that we don't lose our tax free status. Qualified lobbyists (who understand the rules) cost money (which we don't have).
It's tough to make the case that MC is a debilitating disease, when most patients don't look sick, and the medical profession classifies it as a "nuisance disease with a benign course". I've tried to get the attention of a congressman or two, but they just tell me about all the other more worthy causes that they have to fund. Obviously we need a good PR rep, but qualified PR professionals usually expect a good salary.
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.
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dolson
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- Location: Hilton Head, SC
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I agree with you Wayne. A friend of mine who helps us feed feral cats, get them fixed, keeps them vaccinated, keeps them warm in cages with blankets and keeps the program going, has a husband with Chron's Disease. He's had three operations and now has a blockage. I haven't met him, but this is worse than MC. Agree? Thanks for telling me this information. I hope you're getting better, Tex. We need you more than you realize. What would we do without you? If I can help in any way, just call or notify me. Your friend, Dorothy
Hi Dorothy,
I've had two abdominal surgeries — the first was an emergency surgery because of a blockage due to a stenosis in my colon that was apparently caused by diverticular complications. But that wasn't caused by MC specifically, although it may have been an indirect association, since it occurred about 6 or 7 years after my MC symptoms began. And diverticulitis is marked by the same type of inflammation as MC (lymphocytic infiltration). I agree, Crohn's is a much more severe form of IBD.
And I certainly agree that writing to our representatives in Congress and the Senate might help to open their eyes. I plan to write to my own representatives while they are home (at their local offices) during the Holidays. But due to my position I'll have to write as a Principal in the MC Foundation, rather than as a voter. I have a hunch that well-written letters from voters carry more weight than letters from non-profits. This is where a professional would be a big help, because they would know exactly what to say in the letter. Do you know of any secrets in composing letters to our representatives in Washington?
Tex
I've had two abdominal surgeries — the first was an emergency surgery because of a blockage due to a stenosis in my colon that was apparently caused by diverticular complications. But that wasn't caused by MC specifically, although it may have been an indirect association, since it occurred about 6 or 7 years after my MC symptoms began. And diverticulitis is marked by the same type of inflammation as MC (lymphocytic infiltration). I agree, Crohn's is a much more severe form of IBD.
And I certainly agree that writing to our representatives in Congress and the Senate might help to open their eyes. I plan to write to my own representatives while they are home (at their local offices) during the Holidays. But due to my position I'll have to write as a Principal in the MC Foundation, rather than as a voter. I have a hunch that well-written letters from voters carry more weight than letters from non-profits. This is where a professional would be a big help, because they would know exactly what to say in the letter. Do you know of any secrets in composing letters to our representatives in Washington?
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.