My Crohn's and Colitis Blog » What Is Colitis » Slay this dragon!
Slay this dragon!
Question:
The comments are all certainly valid and well appreciated. Now lets deal with the issue. The original post for "slay the dragon" clearly shows the power in the numbers IF people will participate. Again, if we dont do this, who will? The dollars must flow into research and the dollars for research must come from those afflicted and impacted with these diseases. Again just $100 per year will increase by a factor of 10 times at least (based on CCFA distribution) the available funding for research. Those that can contribute a little more, should do so, to cover those that cannot afford even this amount. Lets get started. Lend your voice and your checkbook.
Response:
The comments are all certainly valid and well appreciated. Now lets deal with the issue. The original post for "slay the dragon" clearly shows the power in the numbers IF people will participate. Again, if we dont do this, who will? The dollars must flow into research and the dollars for research must come from those afflicted and impacted with these diseases. Again just $100 per year will increase by a factor of 10 times at least (based on CCFA distribution) the available funding for research. Those that can contribute a little more, should do so, to cover those that cannot afford even this amount. Lets get started. Lend your voice and your checkbook.
Joosie: Most of us here spend all our available cash on our disease. For the past 6 years all my vacations were spent in the hospital. Every extra penny goes to the doctors, health insurance company, hospitals, or pharmacies. I donate time to my local CCFA chapter. I can’t even afford my CCFA membership. I have to donate my time and skill as a replacement for my membership. In theory what you suggest is terrific. Oh yes one more thing I have been investing in research….my body.
Response:
My employer runs an annual charitable funds campaign and encourages participation through payroll deduction. In the past, I’ve contributed to broad-spectrum funds, like United Way, but this year, I noticed I could target my contribution to specific agencies, including, ta-dah!, CCFA. Spread over the year, it’s a lot easier to make a significant contribution. Others who work in large bureaucracies might want to check out this option. (Unfortunately, my current employer, unlike one I worked for a number of years ago, does not provide matching funds to enhance the impact of employees’ charitable giving, but perhaps that is a thing of the past…) Betsy Habich
Response:
This is super! Keep in mind that donations to qualified medical research facilities, schools, and foundations are tax deductable, so, Uncle Sam is participating without even being asked! Would suggest that if any of you wish your donations to go specifically to research only that you spell it out very clearly that your contribution is to go directly to additional research funding and not replace directly or indirectly any funds already dedicated or set aside for research. The CCFA will accept such donations, for example. Also beware of institutions that take a high percentage for their own administration. Some universities are notorius for this- up to 40%!! You can override this little goodie, by stipulating the entire amount is to be used for research. Thanks for your reply and participation.
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Yes, I think so too. Diarrhea (the big D word) is something people don’t want to hear about. If someone asks me what ulcerative colitis is and I say "bloddy diarrhea" (I figure that’s a quick explanation) you can tell they’re sorry they asked! Kathi
UGH! "Bloody diarhea!" Unfortunately, an all too accurate description of the most apparent symptom of our problems! You just can’t talk about it! Plus, people naturally want to have hope, so the first thing that they do, once you have told them how messed up you are, is ask either: 1) "What causes this?" or 2) "What are you doing to cure this?" Then, you tell them there’s no known cause, no gauranteed cure except surgical removal (which has a other set of problems, and you still have to go to the john four or more times a day). Generally, even the most sympathetic feeling whither against such a bleak onslaught. Anymore, when someone gets that "you know what you chould try tone in their voice, I just want to tell them: "Thanks, I appreciate your concern. But I’m a smart guy, and I don’t need your advice. Sympathy, comfort is always welcome, but no advice, please." EJ
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Infuriatingly, I think that the fact that our problem has to do with a largely taboo subject (the ability to control when and where you go to the bathroom) makes it even more of a pariah than AIDS, despite the stigma that some people seem to associate with that horrible, invariably fatal disease. EJ
Yes, I think so too. Diarrhea (the big D word) is something people don’t want to hear about. If someone asks me what ulcerative colitis is and I say "bloddy diarrhea" (I figure that’s a quick explanation) you can tell they’re sorry they asked! Kathi
Response:
Aids is a good disease for pulling on heart strings. We see young people wasting away and dying before their time. Unfortunately, the picture of someone sitting on the toilet 8 hours a day (or more) doesn’t seem to affect people the same way. Maybe we need a "Poster Child." Someone that looks reeeeeally sick. After all, how many of IBD sufferers have heard "You don’t LOOK sick."
so you must be faking….(you couldn’t really feel THAT bad.) Kathi
Response:
There are many dedicated individuals working on finding solutions for these diseases. But everyone seems to be looking to the outside (particularly the government for funding), but we have strength in our own numbers. Strongly suggest we start with ourselves, for if we do not do this, then who will? Here again are a few of the centers as suggestions: Dr Steph Targan, Cedars-Sinai Medical Center 1-310-855-7723 Dr Balfour Sartour, University of North Carolina 1-919-966-0149 Dr Stephen Hanauer, University of Chicago 1-312-702-1466 Dr Dan Podolsky, Mass General Hospital 1-617-726-7411 The CCFA 1-800-932-2423 There are many others, sorry if left out, however come on people, lets start contributing to the research necessary to find the answer for the disease which impacts our lives.
Response:
Of course that’s why we haven’t had much medical research on uc/cd. There really haven’t been than many advances in treatments over the years. This is also why insurance companies get away with telling me that they won’t cover my ostomy supplies since they are a "convenience item." I’m fed up. I’m not keeping my new ileostomy a secret. I am fighting the goddamn insurance company. We have to gather the courage to openly discuss our disease and fight for more research, new treatments, better insurance
coverage. Diabetics had to fight for their supplies to be covered and I will fight for ostomy supplies to be covered. I just wish I had some help. We need to network and fight together to make changes. I’m sorry but I have to beg to differ. There have been some incredible advances over the years. In my early years of crohn’s, I can’t count the number of times the docs came in and said, "We have something new we want to try." Back then there were only 2 drugs for IBD: prednisone and azulfidine. Other tratments included total bowel rest, or just cut out the bad part. Now we have 6MP, asacol, flagyl, and many others. Granted, not everyone is helped by these drugs, but that are a lot more options than there used to be. Since I had my ostomy as a kid and I didn’t get my own insurance til I was grown, I wouldn’t expect them to pay for it. My biggest gripe is that the government won’t let me deduct it from my income tax. Re AIDS comparison. I found it very interesting that one story line on Chicago Hope or ER (I don’t remember which) was an AIDS patient who
needed an ostomy and refused it. He said that he would rather be dead than live with an ostomy and by the end of the episode he was. Other tv medical shows have done inaccurate storylines on IBD. We are always portrayed as bitchy, type A people who cause our own flares! I’m sick of this too! I think most people with ostomies at least had the fleeting thought that they would rather be dead than havbe a bag. I know I did. I’ve also noticed that almost everyone that went ahead and had the surgery said the same thing: "Why didn’t I do it sooner. Aids is a good disease for pulling on heart strings. We see young people wasting away and dying before their time. Unfortunately, the picture of someone sitting on the toilet 8 hours a day (or more) doesn’t seem to affect people the same way. Maybe we need a "Poster Child." Someone that looks reeeeeally sick. After all, how many of IBD sufferers have heard "You don’t LOOK sick." Elsewhere in this thread, there are suggestions to inundate our leaders with letters demanding more research. Good idea, but let me take it a step further. Don’t just demand more research, but give examples of of how the disease has affected your life. If you had to drop out of school because of it… if you can’t get away from the toilet long enough to go watch your kids school play or baseball game (the effect on kids is particularly gut wrenching…) if you can’t get and hold a job because of it… if its thrown your famly into turmoil… USE it. Go for emotional impact. Politicians don’t like to seem like meanies. If you just say it hurts and you have the runs, they will figure "We’ve all had that." I think I’d better stop now. I’m starting to hear The Battle Hymn of the Republic. Rick
Response:
- Hide quoted text — Show quoted text – There are many dedicated individuals working on finding solutions for these diseases. But everyone seems to be looking to the outside (particularly the government for funding), but we have strength in our own numbers. Strongly suggest we start with ourselves, for if we do not do this, then who will? Here again are a few of the centers as suggestions: Dr Steph Targan, Cedars-Sinai Medical Center 1-310-855-7723 Dr Balfour Sartour, University of North Carolina 1-919-966-0149 Dr Stephen Hanauer, University of Chicago 1-312-702-1466 Dr Dan Podolsky, Mass General Hospital 1-617-726-7411 The CCFA 1-800-932-2423 There are many others, sorry if left out, however come on people, lets start contributing to the research necessary to find the answer for the disease which impacts our lives.
Thank you Joosie. I agree with you. There have been some amazing breakthroughs the last few years. We have advanced further in the last few years than we have in the last 30. The above doctors can obtain remission in nearly 90% of all IBD cases, even the worst ones. IBD researchers are examining the first gene replacement therapy in a related disease. This could prove to be an actual "cure".
Response:
Infuriatingly, I think that the fact that our problem has to do with a largely taboo subject (the ability to control when and where you go to the bathroom) makes it even more of a pariah than AIDS, despite the stigma that some people seem to associate with that horrible, invariably fatal disease. EJ
Of course that’s why we haven’t had much medical research on uc/cd. There really haven’t been than many advances in treatments over the years. This is also why insurance companies get away with telling me that they won’t cover my ostomy supplies since they are a "convenience item." I’m fed up. I’m not keeping my new ileostomy a secret. I am fighting the goddamn insurance company. We have to gather the courage to openly discuss our disease and fight for more research, new treatments, better insurance coverage. Diabetics had to fight for their supplies to be covered and I will fight for ostomy supplies to be covered. I just wish I had some help. We need to network and fight together to make changes. Re AIDS comparison. I found it very interesting that one story line on Chicago Hope or ER (I don’t remember which) was an AIDS patient who needed an ostomy and refused it. He said that he would rather be dead than live with an ostomy and by the end of the episode he was. Other tv medical shows have done inaccurate storylines on IBD. We are always portrayed as bitchy, type A people who cause our own flares! I’m sick of this too! Barbara Diehl
Response:
Good idea. I will write. Also would like to suggest that you post and will find the list a valuable resource. Jack
Response:
Inundate all of your local politicians ( MLA, MP, Senator, Governor), matter of fact- anybody with a pen and even a little power. Take a look at how much is spent on AIDS research simply because some sports hero or film star leads that kind of life style. Compare that to how much is spent on UC research. ‘Nuff sed!!!!
Response:
Inundate all of your local politicians ( MLA, MP, Senator, Governor), matter of fact- anybody with a pen and even a little power. Take a look at how much is spent on AIDS research simply because some sports hero or film star leads that kind of life style. Compare that to how much is spent on UC research. ‘Nuff sed!!!!
I am almost embarrassed to say this, but could it possibly be that it is harder for UC-CD sufferers to muster support because our disease is harder to talk about? I know that one of the reasons that I experience such great distress is because if I have a problem (need to go to the bathroom, have gut pain, etc.), I can’t talk about it except to my closest friends and relatives. I feel like I’m on an island some of the time. Infuriatingly, I think that the fact that our problem has to do with a largely taboo subject (the ability to control when and where you go to the bathroom) makes it even more of a pariah than AIDS, despite the stigma that some people seem to associate with that horrible, invariably fatal disease. EJ
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