Visit the Microscopic Colitis Foundation Website
first thanks all for your understanding my anger - concerning the *knowing* that there are 3 lives that shall be ending--
Stanz---all my body parts are ready for anyone that needs them--after I depart this world--
This is what I want U all to know---the STUPITY of me not aware that MC--(etc)--are termed DISEASES!!!! YUP believe it or not I never put them in that terminology!!!
When Lou tagged along with Robert to a KIDNEY Transplant Convention(years before he really started to go down that hill to hell)) there was talk of Robert being a candidate for a kidney--and of course I would be the perfect one to be the donor--being his sister---
This is what I am getting to---I relayed this to my GP Kozin--and he turned around and replied --*U CANNOT give a kidney---U have a DISEASE--COLITIS
Stupidly --I replied---COLITIS is a DISEASE??
YES---I never put colitis in the DISEASE catergory---
So that was the end of that---and we all know that Robert didnt last too much longer--he was way past having a new kidney to give him more time with his family--
thanks again--always good to know we can come here and *spew* it all out--
luve --Barbara
story of stupidty as to MC
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barbaranoela
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story of stupidty as to MC
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Barbara,
I'm sorry, I can feel the frustration in your words.
My friend who eventually got the bone marrow transplant was a donor for her brother when she was a teenager and I think he was around 10. He only lived another year. You can read her story here: http://saffronbutterflyfluttersby.blogspot.com/
Of a family of 4 children, 3 have had cancers. Father is an Oncologist, mother is a nurse. Christine has made this her mission in life and if you Google her name you will see that because of her struggle and activism, there have been many more matches and good outcomes.
Reality is that Robert might possibly have been harmed by your kidney if it was family genetics that predisposed both of you to your diseases and I imagine that may be the same for all of us here. Surely this would have greatly compromised your already challenged immune system. I lost a brother to colon cancer, can't help but think that if my disease had been diagnosed sooner, it might have made a difference. I'm working on my 3 older sisters now, all of whom have severe osteoporosis. Hopefully they will be tested for GS. The brother I am closest to gave up gluten the day I told him about my genetic analysis.
Spew away, Barbara, you've earned it, and it's certainly how we all likely feel.
Connie
I'm sorry, I can feel the frustration in your words.
My friend who eventually got the bone marrow transplant was a donor for her brother when she was a teenager and I think he was around 10. He only lived another year. You can read her story here: http://saffronbutterflyfluttersby.blogspot.com/
Of a family of 4 children, 3 have had cancers. Father is an Oncologist, mother is a nurse. Christine has made this her mission in life and if you Google her name you will see that because of her struggle and activism, there have been many more matches and good outcomes.
Reality is that Robert might possibly have been harmed by your kidney if it was family genetics that predisposed both of you to your diseases and I imagine that may be the same for all of us here. Surely this would have greatly compromised your already challenged immune system. I lost a brother to colon cancer, can't help but think that if my disease had been diagnosed sooner, it might have made a difference. I'm working on my 3 older sisters now, all of whom have severe osteoporosis. Hopefully they will be tested for GS. The brother I am closest to gave up gluten the day I told him about my genetic analysis.
Spew away, Barbara, you've earned it, and it's certainly how we all likely feel.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Barbara,
Please don't feel stupid. You may be right, and the doctors may be wrong. You may just be ahead of them. There is a chance that some day, researchers will prove that all autoimmune diseases are simply symptoms of certain vitamin or mineral deficiencies, or something else, and not really diseases, after all. There is evidence, for example, that certain viruses are symptoms of a vitamin D deficiency, and there is also evidence to suggest that other "diseases", such as ADHD, schizophrenia, bipolar disorder, etc., may possibly be symptoms of combinations of certain issues, such as gluten-sensitivity combined with vitamin D deficiency, and there are many more possibilities.
They can call it a disease if they want, but if it's a symptom, how can it be a disease? Take MC, for example: For those of us who can resolve our symptoms by changing our diet, is MC really a disease? To me, MC is a symptom of a bad diet, not a disease, (at least in my case), because I don't have any disease, if I eat an appropriate diet. Is celiac "disease" really a disease? It doesn't appear to be, because most people who have been diagnosed with celiac "disease", can avoid all traces of gluten, and the so-called "disease" will disappear. Therefore, celiac sprue is a symptom of gluten-sensitivity, and that's all it is, (IMO).
So you're right, Barbara. Your doctor, (bless his heart), is wrong. It's not his fault, though, because he has to refer to it as a disease, because that's the way that the medical community describes it, and he could be ostracized, if he tried to buck the trend.
Luve,
Galahad
Please don't feel stupid. You may be right, and the doctors may be wrong. You may just be ahead of them. There is a chance that some day, researchers will prove that all autoimmune diseases are simply symptoms of certain vitamin or mineral deficiencies, or something else, and not really diseases, after all. There is evidence, for example, that certain viruses are symptoms of a vitamin D deficiency, and there is also evidence to suggest that other "diseases", such as ADHD, schizophrenia, bipolar disorder, etc., may possibly be symptoms of combinations of certain issues, such as gluten-sensitivity combined with vitamin D deficiency, and there are many more possibilities.
They can call it a disease if they want, but if it's a symptom, how can it be a disease? Take MC, for example: For those of us who can resolve our symptoms by changing our diet, is MC really a disease? To me, MC is a symptom of a bad diet, not a disease, (at least in my case), because I don't have any disease, if I eat an appropriate diet. Is celiac "disease" really a disease? It doesn't appear to be, because most people who have been diagnosed with celiac "disease", can avoid all traces of gluten, and the so-called "disease" will disappear. Therefore, celiac sprue is a symptom of gluten-sensitivity, and that's all it is, (IMO).
So you're right, Barbara. Your doctor, (bless his heart), is wrong. It's not his fault, though, because he has to refer to it as a disease, because that's the way that the medical community describes it, and he could be ostracized, if he tried to buck the trend.
Luve,
Galahad
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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barbaranoela
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- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
thanks Connie and Galahad~~~~
Thats Xactly the catagory I had Colitis in--- a sympton of something running amuck in ones body---
Never really Xplained that there could be more harm to Robert---yet-due to the shape he was in--it would have done him no good~~~~
Juliette--returned to college --was taught how to syphon the fluid that builds up in her chest-but she developed severe pain in her leg--had surgery due to a blood clot that developed-----thus Jules is back home--- so Kristyn borrowed a friends car and is on her way home-from college- to be with Jules~~~~
life really sucks at times~~~~
Barbara
Thats Xactly the catagory I had Colitis in--- a sympton of something running amuck in ones body---
Never really Xplained that there could be more harm to Robert---yet-due to the shape he was in--it would have done him no good~~~~
Juliette--returned to college --was taught how to syphon the fluid that builds up in her chest-but she developed severe pain in her leg--had surgery due to a blood clot that developed-----thus Jules is back home--- so Kristyn borrowed a friends car and is on her way home-from college- to be with Jules~~~~
life really sucks at times~~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control