Comments on: Poll on disease awareness http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/ Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Thu, 09 Feb 2012 01:41:43 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Diana http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-3154 Diana Fri, 08 May 2009 01:30:14 +0000 http://ucstory.wordpress.com/?p=706#comment-3154 I am wondering if there is a link with colon cancer and crop dusting near a smaller cotton community where we grew up. I suspect water or some type of consumption, its hard to say we even lived near mines for years. At this point I have no idea just more questions...little answers its frustrating...we are a very large family, my parents had 11 children. I am a mother of eight myself. and a grandmother to over 18 grandbabies. I am worried! I am wondering if there is a link with colon cancer and crop dusting near a smaller cotton community where we grew up. I suspect water or some type of consumption, its hard to say we even lived near mines for years. At this point I have no idea just more questions…little answers its frustrating…we are a very large family, my parents had 11 children. I am a mother of eight myself. and a grandmother to over 18 grandbabies. I am worried!

]]> By: Diana http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-3153 Diana Fri, 08 May 2009 01:25:41 +0000 http://ucstory.wordpress.com/?p=706#comment-3153 The wording is that I am the first gene variant ever seen, no known person out there thus far with this gene. It does not mutate. We had our brother with more polypos (17) I had hundreds, go for a genetic blood test and any day we will know if his is comparable to mine or not. My brother who is having chemotherapy for a year now needs to be tested next and he is against it. However he did decied to do it, I am hoping by tomorrow. My sister has reconstruction surgery next week on her breast, she is willing to test but not ready for now. I am told that her cancer is not related to the colon cancer. My brother who has the kidney cancer was instructed to have a second opionion since it can be worse, he has agreed to the genetic testing too. We are all under alot of stress over all this cancer. Thanks for your thoughtfulness. I send my prayers to everyone who is going through some type of cancer. The wording is that I am the first gene variant ever seen, no known person out there thus far with this gene. It does not mutate. We had our brother with more polypos (17)
I had hundreds, go for a genetic blood test and any day we will know if his is comparable to mine or not. My brother who is having chemotherapy for a year now needs to be tested next and he is against it. However he did decied to do it, I am hoping by tomorrow. My sister has reconstruction surgery next week on her breast, she is willing to test but not ready for now. I am told that her cancer is not related to the colon cancer. My brother who has the kidney cancer was instructed to have a second opionion since it can be worse, he has agreed to the genetic testing too. We are all under alot of stress over all this cancer. Thanks for your thoughtfulness. I send my prayers to everyone who is going through some type of cancer.

]]> By: Brevin http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-3150 Brevin Fri, 08 May 2009 00:03:58 +0000 http://ucstory.wordpress.com/?p=706#comment-3150 If the genetic tests show no link, then there has to be some sort of variable that affects your entire family. I am very sorry to hear about your situation, but please know you and your family are in my thoughts and prayers. If the genetic tests show no link, then there has to be some sort of variable that affects your entire family. I am very sorry to hear about your situation, but please know you and your family are in my thoughts and prayers.

]]> By: Diana http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-3148 Diana Thu, 07 May 2009 22:32:06 +0000 http://ucstory.wordpress.com/?p=706#comment-3148 I had to undergo surgery following a colonoscopy in June 2008. It was found I had (FAM) the many poloyposis disease. I lost 75% of my large intestine. I did not need a J-Pouch. I did not have cancer. I was stunned to learn it is a disease that is not public like you the blogs state. In my opinion is should. I have gained weight and that worries me. I did have a geneitc blood test and it was not any help. My family history is this. Dad had colon cancer and was a surviror he lived 10 years more and died in 1985 from a massive heart attack iat 59, mother had colon cancer and died in 2004 at 73, my older brother died in 2007 and now my other brother has colon caner and has one year with chemo and they tell him he must contiune there is not a cure for him. My oldest sister has breast cancer, I had this surgery in 2008, and now my younger brother has kidney cancer. My out come is slim I think. But the genetic shows no link to my parents cancer thus far. i am thinking that it has to be environemtntal. Who knows...thanks for this site. I had to undergo surgery following a colonoscopy in June 2008. It was found I had (FAM) the many poloyposis disease. I lost 75% of my large intestine. I did not need a J-Pouch. I did not have cancer. I was stunned to learn it is a disease that is not public like you the blogs state. In my opinion is should. I have gained weight and that worries me. I did have a geneitc blood test and it was not any help. My family history is this. Dad had colon cancer and was a surviror he lived 10 years more and died in 1985 from a massive heart attack iat 59, mother had colon cancer and died in 2004 at 73, my older brother died in 2007 and now my other brother has colon caner and has one year with chemo and they tell him he must contiune there is not a cure for him. My oldest sister has breast cancer, I had this surgery in 2008, and now my younger brother has kidney cancer. My out come is slim I think. But the genetic shows no link to my parents cancer thus far. i am thinking that it has to be environemtntal. Who knows…thanks for this site.

]]> By: E. http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-433 E. Sun, 14 Dec 2008 05:37:32 +0000 http://ucstory.wordpress.com/?p=706#comment-433 Actually, Bush's little brother is Marvin Bush and had UC in 1985 (well, according to the following website), he now lives with a permanent ileostomy. http://ibdcrohns.about.com/od/guesswhohasibd/p/marvinbush.htm Apparently though he is and advocate for IBD awareness through CCFA. This is good article about a "Treatment not talked about - Ostomy Surgery" "http://findarticles.com/p/articles/mi_m1154/is_n11_v81/ai_14803041 In fact the article states so well "While ostomies "are still not cocktail party conversation," as Marvin Bush says, they no longer bear the social stigma they once did. More and more people are realizing that they bring invaluable relief and extended life to many thousands every year." Actually, Bush’s little brother is Marvin Bush and had UC in 1985 (well, according to the following website), he now lives with a permanent ileostomy.

http://ibdcrohns.about.com/od/guesswhohasibd/p/marvinbush.htm

Apparently though he is and advocate for IBD awareness through CCFA. This is good article about a “Treatment not talked about – Ostomy Surgery” “http://findarticles.com/p/articles/mi_m1154/is_n11_v81/ai_14803041 In fact the article states so well “While ostomies “are still not cocktail party conversation,” as Marvin Bush says, they no longer bear the social stigma they once did. More and more people are realizing that they bring invaluable relief and extended life to many thousands every year.”

]]> By: Eric http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-432 Eric Wed, 10 Dec 2008 23:59:16 +0000 http://ucstory.wordpress.com/?p=706#comment-432 Ha ha, that's nothing Hannah, I'm 30 and didn't know that the Large Intestine was the same thing as the Colon. Why didn't I know that?!? Ha ha, that’s nothing Hannah, I’m 30 and didn’t know that the Large Intestine was the same thing as the Colon. Why didn’t I know that?!?

]]> By: Hannah http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-431 Hannah Wed, 10 Dec 2008 23:37:12 +0000 http://ucstory.wordpress.com/?p=706#comment-431 I talk about poop in my blog! I wish some celebrities would come forward too. It would sure help the rest of the world (at least) get to hear about this disease. I'm 19 now and I'm surprised how many of my friends still don't even know what a colon is!!! I talk about poop in my blog! I wish some celebrities would come forward too. It would sure help the rest of the world (at least) get to hear about this disease. I’m 19 now and I’m surprised how many of my friends still don’t even know what a colon is!!!

]]> By: mark http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-362 mark Tue, 09 Dec 2008 18:53:26 +0000 http://ucstory.wordpress.com/?p=706#comment-362 I always felt sorta annoyed that Martin Bush (I think his name) never talked about his UC or his subsequent colectomy - although I understand his desire for privacy, I also see that his family has a social responsibility to promote awareness toward IBD, I mean they are the Bush family. If Bob Dole can promote ED (erectile dysfunction) then the Bush family could promote IBD awareness. As we grow the blog, we should try to get some high profile contributors to speak more freely about their experiences. I always felt sorta annoyed that Martin Bush (I think his name) never talked about his UC or his subsequent colectomy – although I understand his desire for privacy, I also see that his family has a social responsibility to promote awareness toward IBD, I mean they are the Bush family. If Bob Dole can promote ED (erectile dysfunction) then the Bush family could promote IBD awareness.

As we grow the blog, we should try to get some high profile contributors to speak more freely about their experiences.

]]> By: Eric http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-363 Eric Tue, 09 Dec 2008 16:26:41 +0000 http://ucstory.wordpress.com/?p=706#comment-363 I agree guys. Something I have always had a problem with was how dehumanizing this disease really is, I mean, learning to control your bladder and BMs is one of the very first things humans learn. It's inherently human to go to the bathroom in a designated place, under your own terms. Once that barrier is broken down, by having a form of IBD or other disease, it's almost like you're not part of the club anymore. Having more high-profile people telling their story would definitely help "re-humanize" Crohn's / Colitis. I agree guys. Something I have always had a problem with was how dehumanizing this disease really is, I mean, learning to control your bladder and BMs is one of the very first things humans learn. It’s inherently human to go to the bathroom in a designated place, under your own terms. Once that barrier is broken down, by having a form of IBD or other disease, it’s almost like you’re not part of the club anymore. Having more high-profile people telling their story would definitely help “re-humanize” Crohn’s / Colitis.

]]> By: Colette http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-364 Colette Tue, 09 Dec 2008 14:24:43 +0000 http://ucstory.wordpress.com/?p=706#comment-364 This is so true. There are still so many people I talk to that have not idea what this disease even is. President George W. Bush's Brother suffers from UC, but you don't see him sharing this story on a magazine. Nor did we know that while his father was in office he had a major flare and was diagnosed..... This is so true. There are still so many people I talk to that have not idea what this disease even is. President George W. Bush’s Brother suffers from UC, but you don’t see him sharing this story on a magazine. Nor did we know that while his father was in office he had a major flare and was diagnosed…..

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