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.
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.
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"
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
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"
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
" 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. "
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
" 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".
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"
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.
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"
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.
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.
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"
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.
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"
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
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"
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.
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"
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.
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
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"
Diet has a huge amount to do with pain and many types of gastro problems. Have you heard of the specifiic carbohydrate diet, it is an amazing way to live with out the pain! No drugs and pretty much immediate relief. It is not easy to monitor everything that goes in to your body but once you have felt it, pain free and energetic, it is an incredible way to live. I will never go back again! Unless as many people who have lived on the diet for many years have professed, it (the diet) actually gave the body time to heal and they could eat moderately (pastas etc) with out full on attacks, maybe just feel sluggish! This is my hope that if I give my body the time to heal through this restricted diet I will be able to safely eat out, not worry about gluten and hidden ingredients. Any way you can look up the info on the web, its helped many a person get over and off the drugs. The first book was called Food and the Gut Reaction, the next update, Breaking the Vicious Cycle by Elaine Gotschall
I heard about the 2007 winners of the America's Best Restrooms and thought it would fit nice in this thread.
I've always wanted to chronicle a book about the best/worse restrooms in each major city...Lord knows I've visited my fair share of them.
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"
I don't mean to hi-jack your thread or anything, but some of my friends here might know that I also suffer from Crohn's Disease.
I'm on Colazal, 12 pills per day... my doctor originally told me that it would probably be a temporary thing until my body starts getting used to it, but I've been on it for a year and still going strong.
The very strange thing about this disease is that different foods effect people differently. The thing that really hits me are things with small seeds, i've cut out anything with poppy seeds, strawberries, raspberries etc. I don't know how severe my case is because I can drink a good bit of alcohol without getting any pains or urges and I'm too much of a milk-aholic to give it up completely. Out of complete willingness I've cut out all caffine, occasionally i'll have some chocolate but I havnt had coffee in about a year now... Although I will treat myself to an iced coffee every 3-4 weeks b/c it's a summer thing ya know. I cut out soda completely.
Someone mentioned the Specific Carb Diet. Yes, i've tried that for about 2 months when I was first diagnosed. It's extremely difficult to follow even if you are good about it. I found it especially hard to follow since I was on that diet when I was in college and not everything I needed (almond flour) was always on hand. The shitty thing about Diet and Crohn's is that doctors will not tell you what to eat and what not to eat, I asked him personally if theres anything he knows i should stay away from and he said nope, eat anything you want... which took me by suprise, but after reading up a lot I found this is what doctors say b/c everyone is effected so differently.
I was diagnosed after Mike came out and started talking about his case so I never experienced going through this shitty (pun intended?) disease without his support. However, I do feel blessed because I feel like I have him on my side and I know what he has gone through first hand... when I was first diagnosed I was going to the bathroom close to 20-25 times a day and I had lost 40 lbs... now I only go 2-3 times a day and the urges arnt nearly as bad.
It's really great to have the support of the PJ fans, so thank you all for your outreach for those of us who suffer with Crohn's
I heard about the 2007 winners of the America's Best Restrooms and thought it would fit nice in this thread.
I've always wanted to chronicle a book about the best/worse restrooms in each major city...Lord knows I've visited my fair share of them.
PBM
hey stranger! - how's the little guy?
I was going to do a book on club restroom walls around NA and call it I shit and I Think (gee wonder where I stole that from - actually it was even somebody's username here)
this was about 5 or 6 years ago - tried to recruit peeps on the boards to take polaroids from rock clubs but the idea seemed to coincide with a mass renovation of club cans!(I never follow through)
do it - it's a great idea - you could make the cover a urnial door, like Kramer's coffee table book!!
AND it actually serves an important purpose for frequent flyers
we're all sentient snowflakes
~~~~~~~~~~~~~~~~~~~~
I'm a number that doesn't count
~~~~~~~~~~~~~~~~~~~
the nothing ventured - the nothing feigned
I'm sorry for all of you who suffer with Crohns, Colitis or IBS. I'm hopeful that a cure or better treatments will just be around the corner for you all.
As someone with rheumatoid arthritis I understand what it means to need the feeling that someone else has it and knows what you're going through. It's amazing to have Mike around as a support for you guys.
I understand what you go through with the medications and the pain, I have to use a lot of similar medications to help control my arthritis.
I saw someone had quoted 'Down' and it means so much to me and I think it holds the same meaning to a lot of you.
I have Ankylosing Spondylitis as well. I've been taking Remicade for the past two years and, for the most part, I have been doing fairly well.
I still have frequent bathroom visits (up to 8 or more a day).
Stephen...I'm glad to hear you have a pretty upbeat attitude about your condition...I've found that the more stress-free and relaxed I am, the less likely I am to have a flare up.
share...I've been threatening to compile a book based on my bathroom adventures for a while. I wanted to do "Famous Bathrooms I've Visited" as well. However, PissBottleBoy keeps me busy...and he's doing quite well. He started crawling last weekend, so I'm trying to keep up.
Cheers everyone.
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"
My cousin found a couple of articlesabout a little boy named Alec Kraft who has Crohns.
Interesting reads.
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"
Cheers to ontheflipside for posting this in the original thread.
Pearl Jam Guitarist Mike McCready Discusses Battle with Crohn's Disease on Live Webcast on October 9, 2007 at 7:00 PM EDT/6:00 PM CT/4:00 PM PT.
Don't forget to register and submit your questions.
Cheers,
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"
I have Ankylosing Spondylitis as well. I've been taking Remicade for the past two years and, for the most part, I have been doing fairly well.
I still have frequent bathroom visits (up to 8 or more a day).
I have Ibs and going to concerts has given me killer anxiety because i am afraid that i am going to have to go to the bathroom urgently and not make it in time. How do you get through it at concerts, entertainment events and the like?
Sometimes i take an imodium to block the urge so i can enjoy myself but i know its not healthy to do that all the time.
And for those with RA i was just diagnosed so i am there with you.
Comments
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.
This is my kind of love...
♥♥♥
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.
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
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
I here ya. Luckily I am a Canadian Bastard. Glad to hear you're better.
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. "
This is my kind of love...
♥♥♥
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".
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
Wishlist Foundation: http://wishlistfoundation.org
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.
PBM
Wishlist Foundation: http://wishlistfoundation.org
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.
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
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
my cousin has it and IBS still makes it hard for me to gain weight/muscle for that matter
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
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
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
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
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
I avoid most of them, when possible, but you have to live life too.
PBM
Wishlist Foundation: http://wishlistfoundation.org
I've always wanted to chronicle a book about the best/worse restrooms in each major city...Lord knows I've visited my fair share of them.
PBM
Wishlist Foundation: http://wishlistfoundation.org
I don't mean to hi-jack your thread or anything, but some of my friends here might know that I also suffer from Crohn's Disease.
I'm on Colazal, 12 pills per day... my doctor originally told me that it would probably be a temporary thing until my body starts getting used to it, but I've been on it for a year and still going strong.
The very strange thing about this disease is that different foods effect people differently. The thing that really hits me are things with small seeds, i've cut out anything with poppy seeds, strawberries, raspberries etc. I don't know how severe my case is because I can drink a good bit of alcohol without getting any pains or urges and I'm too much of a milk-aholic to give it up completely. Out of complete willingness I've cut out all caffine, occasionally i'll have some chocolate but I havnt had coffee in about a year now... Although I will treat myself to an iced coffee every 3-4 weeks b/c it's a summer thing ya know. I cut out soda completely.
Someone mentioned the Specific Carb Diet. Yes, i've tried that for about 2 months when I was first diagnosed. It's extremely difficult to follow even if you are good about it. I found it especially hard to follow since I was on that diet when I was in college and not everything I needed (almond flour) was always on hand. The shitty thing about Diet and Crohn's is that doctors will not tell you what to eat and what not to eat, I asked him personally if theres anything he knows i should stay away from and he said nope, eat anything you want... which took me by suprise, but after reading up a lot I found this is what doctors say b/c everyone is effected so differently.
I was diagnosed after Mike came out and started talking about his case so I never experienced going through this shitty (pun intended?) disease without his support. However, I do feel blessed because I feel like I have him on my side and I know what he has gone through first hand... when I was first diagnosed I was going to the bathroom close to 20-25 times a day and I had lost 40 lbs... now I only go 2-3 times a day and the urges arnt nearly as bad.
It's really great to have the support of the PJ fans, so thank you all for your outreach for those of us who suffer with Crohn's
- SF
hey stranger! - how's the little guy?
I was going to do a book on club restroom walls around NA and call it I shit and I Think (gee wonder where I stole that from - actually it was even somebody's username here)
this was about 5 or 6 years ago - tried to recruit peeps on the boards to take polaroids from rock clubs but the idea seemed to coincide with a mass renovation of club cans!(I never follow through)
do it - it's a great idea - you could make the cover a urnial door, like Kramer's coffee table book!!
AND it actually serves an important purpose for frequent flyers
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I'm a number that doesn't count
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the nothing ventured - the nothing feigned
As someone with rheumatoid arthritis I understand what it means to need the feeling that someone else has it and knows what you're going through. It's amazing to have Mike around as a support for you guys.
I understand what you go through with the medications and the pain, I have to use a lot of similar medications to help control my arthritis.
I saw someone had quoted 'Down' and it means so much to me and I think it holds the same meaning to a lot of you.
peace
I have Ankylosing Spondylitis as well. I've been taking Remicade for the past two years and, for the most part, I have been doing fairly well.
I still have frequent bathroom visits (up to 8 or more a day).
Stephen...I'm glad to hear you have a pretty upbeat attitude about your condition...I've found that the more stress-free and relaxed I am, the less likely I am to have a flare up.
share...I've been threatening to compile a book based on my bathroom adventures for a while. I wanted to do "Famous Bathrooms I've Visited" as well. However, PissBottleBoy keeps me busy...and he's doing quite well. He started crawling last weekend, so I'm trying to keep up.
Cheers everyone.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Interesting reads.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Pearl Jam Guitarist Mike McCready Discusses Battle with Crohn's Disease on Live Webcast on October 9, 2007 at 7:00 PM EDT/6:00 PM CT/4:00 PM PT.
Don't forget to register and submit your questions.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org