Crohn's Disease

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  • Foxy Mop
    Foxy Mop Posts: 2,823
    SUPPORT AN INCREASE IN FUNDING
    FOR THE NATIONAL INSTITUTES OF HEALTH

    The House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education is expected to mark-up its FY08 funding bill this week. This bill provides annual appropriations for biomedical research at the National Institutes of Health (NIH).

    All Crohn's & Colitis Foundation advocates are encouraged to contact the members of the House Labor-HHS-Education Subcommittee and ask that the FY08 bill provide a 6.7% funding increase for NIH. In addition, please contact your own member of the House of Representatives and ask them to encourage the members of the Labor-HHS-Education Subcommittee to provide a 6.7% increase for NIH.

    This increase would halt the erosion of the nation's medical research enterprise, and enable investigators to accelerate the momentum of discovery for conditions like inflammatory bowel disease. The 6.7% proposed increase has been endorsed by hundreds of the nation's leading medical research organizations and patient advocacy groups -- including the Foundation.

    The members of the House Labor-HHS Appropriations Subcommittee are listed below. If you do not know who your specific Representative is, please go to http://www.congress.org and enter your zip code. Phone numbers for all congressional offices are also listed on http://www.congress.org. Calling works best, but if you prefer to communicate via e-mail, you can do so through http://www.congress.org.

    Some tips for calling congressional offices:

    Ask to speak with the legislator's Health Aide.

    Introduce yourself and explain what IBD is and how it impacts you and your family.

    Emphasize how important research is to improving the quality of life for IBD patients.

    Specifically ask the legislator to support a 6.7% increase for the NIH in FY08. If that member is not on the Labor-HHS Appropriations Subcommittee, ask him/her to communicate their support for a 6.7% increase to the Subcommittee.

    Give the aide your contact information and ask to be kept informed of the legislator's actions on your request.
    Thank you! Please keep us informed at advocacy@ccfa.org of the e-mails you have sent, and the responses you have received.


    MEMBERS OF THE HOUSE LABOR-
    HEALTH AND HUMAN SERVICES-
    EDUCATION APPROPRIATIONS SUBCOMMITTEE

    Representatives and phone numbers:

    Chairman: David R. Obey (D-WI): 202-225-3365
    Nita M. Lowey (D-NY): 202-225-6506
    Rosa DeLauro (D-CT): 202-225-3661
    Jesse L. Jackson, Jr. (D-IL): 202-225-0773
    Patrick J. Kennedy (D-RI): 202-225-4911
    Lucille Roybal-Allard (D-CA): 202-225-1766
    Barbara Lee (D-CA): 202-225-2661
    Tom Udall (D-NM): 202-225-6190
    Michael Honda (D-CA): 202-225-2631
    Betty McCollum (D-MN): 202-225-6631
    Tim Ryan (D-OH): 202-225-5261

    Ranking Member James Walsh (R-NY): 202-225-3701
    Ralph Regula (R-OH): 202-225-3876
    John E. Peterson (R-PA): 202-225-5121
    Dave Weldon (R-FL): 202-225-3671
    Michael K. Simpson (R-ID): 202-225-5531
    Dennis Rehberg (R-MT): 202 225-3211



    Besides Crohn's, the NIH does research for all health related matters (though I'm not entirely knowledgeable of their history, etc.). Increasing funding to allow for more research that helps benefit peoples health & lives is important.
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • rhcpjam1029
    rhcpjam1029 Posts: 1,982
    feel better my friend.
    Beavis: All my friends are brown and red? What does that mean?
    Butthead: It means that his friends are like turds and that they like suck.
    Beavis: Heh heh. Oh yeah. Yeah! Get those spoons out of my face before I shove them up your butt!
    Butthead: Huh huh.
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    It seems that my insurance provider is wary of my condition, so they are making my doctor, the hospital and me jump through hoops in order for them to pay for Remicade.

    Don't get me wrong, it's a pricey medicine...but I also have to foot a large portion of the bill as well.

    My doctor had to write a letter to the insurance company (after various other methods failed to please them including phone calls and filling out forms) informing them that I need this treatment to help keep my condition in remission.

    Here's a portion of what Dr. Shiben wrote:

    "It has been requested that I write a letter of necessity for Remicade treatment for Brent Hinson. I have filled out the appropriate forms and made a phone call to the Anthem Utilization Management Unit on April 13. I was told his Remicade was approved. Now, I am asked to write a letter. Another example of wasting healthcare time and money...

    ...Given the severe nature of this disease and how it was very life-threatening in the past, I do not recommend stopping Remicade therapy. I believe this will result in disease flare up. That would probably lead to hospitalization and surgical intervention, all of which are quite costly and hopefully it would not cost him his life. I therefore recommend that he stay on Remicade indefinitely."

    I was quite impressed with his strong words and support.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • DR.PJ.MTL
    DR.PJ.MTL Posts: 37
    Hey PBM, I also have Crohn's (am 32 and have had it for 20 yrs) disease and am on Remicade. To tell you the truth it's like a miracle drug. After all the steroid runs and ineffective drug treatments, Remicade was like manna from heaven.

    Some advice, stay away from coffee, it's a f--king killer!
    "Women, can't live with'm....pass the beer nuts" - Norman Peterson
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    DR.PJ.MTL wrote:
    Hey PBM, I also have Crohn's (am 32 and have had it for 20 yrs) disease and am on Remicade. To tell you the truth it's like a miracle drug. After all the steroid runs and ineffective drug treatments, Remicade was like manna from heaven.

    Some advice, stay away from coffee, it's a f--king killer!

    It really has improved my qualitty of life from a health standpoint. I wish the price tag was a little cheaper though.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • DR.PJ.MTL
    DR.PJ.MTL Posts: 37
    PissBottleMan wrote:
    It really has improved my qualitty of life from a health standpoint. I wish the price tag was a little cheaper though.

    PBM


    I here ya. Luckily I am a Canadian Bastard. Glad to hear you're better.
    "Women, can't live with'm....pass the beer nuts" - Norman Peterson
  • Foxy Mop
    Foxy Mop Posts: 2,823
    PissBottleMan wrote:
    It really has improved my qualitty of life from a health standpoint. I wish the price tag was a little cheaper though.

    PBM

    Hey PBM, if you still have problems w/your insurance people, contact Jennifer Jaff of Advocacy for Patients.. she's a real sweetheart and may be able to help you out w/da man. I have her contact info if ya need it :)

    *edit*
    I just remebered that the mike coffe auction benefits her org too: http://www.advocacyforpatients.org/

    " You may request assistance by writing to attorney Jennifer C. Jaff, Esq. at patient_advocate@sbcglobal.net or by calling her at (860) 674-1370. If she can't help you, she will try to direct you to an appropriate resource. "
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Foxy Mop wrote:
    Hey PBM, if you still have problems w/your insurance people, contact Jennifer Jaff of Advocacy for Patients.. she's a real sweetheart and may be able to help you out w/da man. I have her contact info if ya need it :)

    *edit*
    I just remebered that the mike coffe auction benefits her org too: http://www.advocacyforpatients.org/

    " You may request assistance by writing to attorney Jennifer C. Jaff, Esq. at patient_advocate@sbcglobal.net or by calling her at (860) 674-1370. If she can't help you, she will try to direct you to an appropriate resource. "


    Thanks Foxy...right now, I pay my $80 a month to the hospital. I commonly refer to that as "the bill that will never be paid". :D

    If my insurance company continues to decline coverage or question the need for my medicine, I will definitely look into contacting her.

    Thanks again.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    I TiVo'd Entourage last night and watched some of it during lunch today.

    While trying to get medicial marijuana, the doctor asks Drama if he has any kind of illness that was necessitate a prescription. One of the first things he asked, "Do you have Crohn's Disease?".

    I seem to recall several people (in this thread) say that marijuana has helped with their symptoms.

    Who would think that you could smoke marijuana to ease your irritable bowel.

    :o

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Ericastrada
    Ericastrada Posts: 70
    PissBottleMan wrote:
    I TiVo'd Entourage last night and watched some of it during lunch today.

    While trying to get medicial marijuana, the doctor asks Drama if he has any kind of illness that was necessitate a prescription. One of the first things he asked, "Do you have Crohn's Disease?".

    I seem to recall several people (in this thread) say that marijuana has helped with their symptoms.

    Who would think that you could smoke marijuana to ease your irritable bowel.

    :o

    PBM

    I've actually been trying to find out if I have Crohn's Disease or not (Been going to the hospital and doctor for about the last 3 months, still don't know anything). But what I will tell you is when I would smoke, I could eat anything I wanted and didn't feel any symptoms at all. :)
    Show me potato salald!!!
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Ericastrada wrote:
    I've actually been trying to find out if I have Crohn's Disease or not (Been going to the hospital and doctor for about the last 3 months, still don't know anything).

    Have you seen a gastroenterologist? The first thing he did was have me have a colonoscopy...from that scope, he was able to diagnose my Crohn's.

    Keep us posted.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Ericastrada
    Ericastrada Posts: 70
    PissBottleMan wrote:
    Have you seen a gastroenterologist? The first thing he did was have me have a colonoscopy...from that scope, he was able to diasnose my Crohn's.

    Keep us posted.

    PBM

    Just had one Wednesday. He said he doesn't think its Crohn's, but it still could be, then he sent me to the hospital for more testing. ASt this point, they just seemed stumped. They tried to tell me it was just a viral infection, but nothing showed up in my blood work, and like I said, its been going on for months. At this point I really don't care what it is, I just want to know whats wrong with me.
    Show me potato salald!!!
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Ericastrada wrote:
    Just had one Wednesday. He said he doesn't think its Crohn's, but it still could be, then he sent me to the hospital for more testing. ASt this point, they just seemed stumped. They tried to tell me it was just a viral infection, but nothing showed up in my blood work, and like I said, its been going on for months. At this point I really don't care what it is, I just want to know whats wrong with me.

    I understand your frustration. I went 6-7 months not knowing what my problem was...I was in constant pain from eating things...going to the bathroom all the time.

    Don't be afraid to switch doctors or get a 2nd opinion. I'm on my 3rd Gastro doctor since being diagnosed in '00.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Yellow Bedwetter
    Yellow Bedwetter NYC Posts: 2,832
    and tho im thankful not to have Crohn's i can sort of understand the feeling
    my cousin has it and IBS still makes it hard for me to gain weight/muscle for that matter
    2005: Borgata 2, Philly
    2006: Camden 1&2, East Ruth 1&2
    2008: BONNAROO, MSG1, MSG2, Hartford
    2009: Philly 1, 2, 4
    2010: Hartford, MSG1, MSG2
    2012: Made in America
    2013: BK1, BK2, Hartford
    2015: Global Citizens
    2016: MSG 2 (ISO MSG1)
    EV Solo: NJPAC 2008; Tower Theatre, PA 2009; Hartford 2011
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Yellow Bedwetter wrote:
    my cousin has it and IBS still makes it hard for me to gain weight/muscle for that matter

    I go through periods where I gain a lot of weight (usually because of some sort of medicine/steroid) and then drop it fairly quickly.

    I think, at one point, I got up to 270lbs and then 4 months later, I was back down to 235lbs.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Jackieboy
    Jackieboy Posts: 78
    What I like is that Mike makes an issue out of it and tries to shed light on the handicap. I admire that! If I had had Crohn's I'd be very glad to know that there are others like me. Seriously. That is strenghtening.
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Jackieboy wrote:
    What I like is that Mike makes an issue out of it and tries to shed light on the handicap. I admire that! If I had had Crohn's I'd be very glad to know that there are others like me. Seriously. That is strenghtening.

    He's open a lot of doors for me, personally. Through him, I've been able to talk openly about the disease and work on finding a cure.

    He has a platform and he's using it to make a difference. Quite inspiring.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Ericastrada
    Ericastrada Posts: 70
    PissBottleMan wrote:
    I understand your frustration. I went 6-7 months not knowing what my problem was...I was in constant pain from eating things...going to the bathroom all the time.

    Don't be afraid to switch doctors or get a 2nd opinion. I'm on my 3rd Gastro doctor since being diagnosed in '00.

    PBM
    Yeah, I have to see my doctor again at the end of this month, if he doesn't have any idea of what it is this time, I'm going to be looking for another one.
    Show me potato salald!!!
  • Yellow Bedwetter
    Yellow Bedwetter NYC Posts: 2,832
    PissBottleMan wrote:
    I go through periods where I gain a lot of weight (usually because of some sort of medicine/steroid) and then drop it fairly quickly.

    I think, at one point, I got up to 270lbs and then 4 months later, I was back down to 235lbs.

    PBM

    i lost about 10 lbs over spring break in Jamaica due to the food/heat upsetting my IBS...i had 2 "episodes" as i call them that bring back all the horrible times i had with IBS when i was younger
    i take fibercon, belladonna, and other special pills when it gets real bad
    2005: Borgata 2, Philly
    2006: Camden 1&2, East Ruth 1&2
    2008: BONNAROO, MSG1, MSG2, Hartford
    2009: Philly 1, 2, 4
    2010: Hartford, MSG1, MSG2
    2012: Made in America
    2013: BK1, BK2, Hartford
    2015: Global Citizens
    2016: MSG 2 (ISO MSG1)
    EV Solo: NJPAC 2008; Tower Theatre, PA 2009; Hartford 2011
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    I know which foods/drinks set me off...pizza, salads, raw vegetables, beer/alcohol (:(), milk, fried foods.

    I avoid most of them, when possible, but you have to live life too.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org

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