PBM, great video!! one of my fav songs and I always loved the line "think I'll throw these pills away"
yes I totally want to throw my pills away.
update: I am getting close to my second major surgery. i have a stricture in my rectum that the remicade, nor the gazillion other meds i am on, is alleviating. Doctors say ostomy surgery is the most likely outcome. i am only 29 years old and am scared as hell about this. There is a little hope, a very slim chance that they can just do a bowel resection. problem is the that low down is very difficult to do a resection. docs wouldn't know til they opened me up. currently I am getting several test done so they can get a good look at my intestines around the stricture(one of the test was a barium enema, ouch!) I try to keep my head up but am scared. Only positive about and ostomy surgery, I wouldn't have to worry about restrooms!!!
Thoughts are going out your way. PBW and I spoke to Krohn in Kitchener and he really put a positive spin on the Ostomy Sugery.
We face an uphill struggle everyday...keep positive thoughts and know that you will get through this.
Send me an email or PM to keep me updated:
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 just want to say to PBM that the video was fantastic... choking stuff.
and to PJFan4Life (?) i hope you guys stay as strong as possible... my daughter had a barium enema when she was only 4 months old and she was screaming in agony...
i hope the breeze of recognition for this disease rises to a hurricane
good luck to you all
:cool:
oh scary... 40000 morbidly obese christians wearing fanny packs invading europe is probably the least scariest thing since I watched an edited version of The Care Bears movie in an extremely brightly lit cinema.
PBM, great video!! one of my fav songs and I always loved the line "think I'll throw these pills away"
yes I totally want to throw my pills away.
update: I am getting close to my second major surgery. i have a stricture in my rectum that the remicade, nor the gazillion other meds i am on, is alleviating. Doctors say ostomy surgery is the most likely outcome. i am only 29 years old and am scared as hell about this. There is a little hope, a very slim chance that they can just do a bowel resection. problem is the that low down is very difficult to do a resection. docs wouldn't know til they opened me up. currently I am getting several test done so they can get a good look at my intestines around the stricture(one of the test was a barium enema, ouch!) I try to keep my head up but am scared. Only positive about and ostomy surgery, I wouldn't have to worry about restrooms!!!
I know your pain, in every sense of the word. I had the surgery when I was 18. There is plenty of support out there, right here is a good place to start...PBM is a great shoulder to have in your corner. Send me a PM or email (<!-- e --><a href="mailto:crohnolio@hotmail.com">crohnolio@hotmail.com</a><!-- e -->) if you want to talk some, and keep us updated here on the board.
Doesn't PBM's video just hit it home. Perfect song, perfect message. Awsome work
Looking for a daring adventure? Do you want to reach great heights? Go for an extreme experience and take part in the CCFA Third Annual Jumping Blue Beans™ Jump Across America™ skydiving event, taking place at seven locations across the United States. Register today for this exciting event!
Freefall and Glide!
Brave individuals will experience a tandem skydive to help raise funds for CCFA's vital programs. All jumps are from altitudes of 12,000 to 14,000 ft. above sea level. It all starts with an extreme freefall -- and, after that intense thrill, you and your tandem instructor will then experience a quiet, serene ride, flying your parachute like a glider to landing. You will see spectacular sights of mountains, oceans, valleys, or aerial views of cities, depending on your location. Choose from seven great spots:
Skydive Jersey Shore, Farmingdale, NJ
May 13, 2006
Skydive San Diego, Jamal, CA
May 13, 2006
Skydive City, Zephyrhills, FL
May 13, 2006
Chicagoland Skydiving, Hinckley, IL
June 3, 2006
Ocean City Skydiving, Berlin, MD
June 3, 2006
Skydive Dallas, Dallas, TX
June 10, 2006
Mile-Hi Skydiving, Boulder, CO
July 15, 2006
Jump! Pledge! Cheer! Volunteer! Sponsor! Whatever you do, support CCFA in our fight against Crohn's & colitis. Become a Jumping Blue Bean™ and raise funds to help find a cure. For more information or to register online: click here, contact us at 800-343-3637, ext. 216, or e-mail greatevents@ccfa.org.
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"
Looking for a daring adventure? Do you want to reach great heights? Go for an extreme experience and take part in the CCFA Third Annual Jumping Blue Beans™ Jump Across America™ skydiving event, taking place at seven locations across the United States. Register today for this exciting event!
Freefall and Glide!
Brave individuals will experience a tandem skydive to help raise funds for CCFA's vital programs. All jumps are from altitudes of 12,000 to 14,000 ft. above sea level. It all starts with an extreme freefall -- and, after that intense thrill, you and your tandem instructor will then experience a quiet, serene ride, flying your parachute like a glider to landing. You will see spectacular sights of mountains, oceans, valleys, or aerial views of cities, depending on your location. Choose from seven great spots:
Skydive Jersey Shore, Farmingdale, NJ
May 13, 2006
Skydive San Diego, Jamal, CA
May 13, 2006
Skydive City, Zephyrhills, FL
May 13, 2006
Chicagoland Skydiving, Hinckley, IL
June 3, 2006
Ocean City Skydiving, Berlin, MD
June 3, 2006
Skydive Dallas, Dallas, TX
June 10, 2006
Mile-Hi Skydiving, Boulder, CO
July 15, 2006
Jump! Pledge! Cheer! Volunteer! Sponsor! Whatever you do, support CCFA in our fight against Crohn's & colitis. Become a Jumping Blue Bean™ and raise funds to help find a cure. For more information or to register online: click here, contact us at 800-343-3637, ext. 216, or e-mail greatevents@ccfa.org.
PBM
Very cool. i saw this on the website. i live in Fl, so if i am well enough, I will go to the Zephyrhills jump.
I would probably shit my pants...ok, I would do that anyway.
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 go in for my 4th Remicade infusion on Monday. I think it is working...I still go to the bathroom a lot, but my energy level is better.
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"
Well Ive always wanted to go skydiving, heres my chance. I hope the CCFC up here decides to have that fundraiser too, saw nothing on website. Lets hope Im still crazy enough to consider this when the time comes too lol.
I dated someone a while back who had crohns. it concerned me because he didn't really take care of himself very well. I think he avoided dairy and stuff like that, but drank beer and ate and drank a lot of stuff I didn't think you were supposed to with crohns.
Sadly, my diet isn't what it should be. However, I've had days where I didn't eat much...just drank water and still go to the bathroom 10 times.
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"
Don't tell Fanch, but I enjoy Krystal better than White Castle.
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 only know a couple people with Crohns personally;)
But the one chick I know seems to have a real problem eating properly.
I cant imagine having to make such huge changes in diet but if it meant not being in pain I would give it my all. It just seemed fake coming from her.
but I guess I should have also quit smoking by now.
the person below me smells like cat pee and raisins...
I only know a couple people with Crohns personally;)
But the one chick I know seems to have a real problem eating properly.
I cant imagine having to make such huge changes in diet but if it meant not being in pain I would give it my all. It just seemed fake coming from her.
but I guess I should have also quit smoking by now.
I don't have much pain since they took some of my colon. However, not having part of your colon makes you go to the bathroom a lot. If I never sit down on the toilet again I would be a happy man.
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"
Up and down...I don't get much sleep...so I have low energy.
It's a daily battle.
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 hope if Pj tours this next album they hit some of the states below Alberta so I can help out with some CCF stuff but witha baby comin in may I hope they dont tour till fall fore selfish reasons
the person below me smells like cat pee and raisins...
Understandable. We already have the support of the CCFA for the next tour.
You're forever bookmarked in Pearl Jam history...not many of us can say that.
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"
Oh PBM you make me blush.
My heart still skips a bit when I listen to the boot and hear my name...
I m determined to make it to a US show though, I ve never gone to a show in the states.
the person below me smells like cat pee and raisins...
The wife and myself are really hoping for some show's in Canada and some shows close the Ontario border. We are planning to travel for this next tour, and would love to hit a Kentuky show I'm going to do my part and attempt to get CCFC support if PJ comes back to Canada for a few shows (hopefully more then a few! )
So few have understood what kind of pain Crohn's brings, and the difficulties the side effects of the medication AND the disease itself bring. The vast majority of people in this thread show the understanding and compassion I've always hoped I would find. I am very fortunate to have met people like PBM.
Gather strength from friends and family. It's needed for the long road ahead. That strength will help through the trials and tests that are in the future. I learned at a rather young age that life is to short to allow this illness to win. It's tough to adjust a lifestyle so radically, but i'd much rather have the life, then the style.
Kitchener calling Pearl Jam! Kitchener calling Pearl Jam! Please come back!
Agreed Krohn...everyone is very supportive...Everyone has been really great about rallying around our cause.
The more awareness we spread, the closer we are to a cure.
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"
Up and down...I don't get much sleep...so I have low energy.
It's a daily battle.
PBM
PBM, is the low energy due to all the calories you eat just like being evacuated before your body can use them? it seems like you must have to eat all the time.
PBM, is the low energy due to all the calories you eat just like being evacuated before your body can use them? it seems like you must have to eat all the time.
Because I am anemic, I have to get a B-12 shot monthly because I lose so much by going to the bathroom all the time.
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"
"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 am recovering from Ulcerative Colitis and am doing great. I have had this disease for almost two years now. I made my contribution this year, did you all???
CARPE DIEM!!
"Oh, if I knew where it was I would take you there but there's much more than this. Woh see the world."
"I know I was born and I know that I'll die. The in between is mine"
"No need to be void, or save up on life. You got to spend it all"
Minneapolis 1998, St. Paul 2003, Alpine Valley 2003, Thunder Bay 2005, St. Paul 2006 I, St. Paul 2006 II, The Gorge I 2006, Hartford 2008, Mansfield I 2008, Mansfield II 2008, Chicago I 2009, EV Solo Minneapolis 2011, PJ 20 Alpine Valley I 2011, PJ 20 Alpine Valley II 2011, Wrigley 2013, Moline 2014, St. Paul 2014
I saw my gastroenterologist today and I am suppose to start Remicade on May 12.
Sure hope all goes well with the medication. My brother has Crohn's, I myself have IBS & Fibromyalgia and this Jan 30 will be 4 yrs since I had 1/3 of my colon removed because of cancer. So far I am cancer free. still struggle with the other things but its nice to be alive!!!!!!
Comments
Thoughts are going out your way. PBW and I spoke to Krohn in Kitchener and he really put a positive spin on the Ostomy Sugery.
We face an uphill struggle everyday...keep positive thoughts and know that you will get through this.
Send me an email or PM to keep me updated:
PBM
Wishlist Foundation: http://wishlistfoundation.org
and to PJFan4Life (?) i hope you guys stay as strong as possible... my daughter had a barium enema when she was only 4 months old and she was screaming in agony...
i hope the breeze of recognition for this disease rises to a hurricane
good luck to you all
:cool:
I know your pain, in every sense of the word. I had the surgery when I was 18. There is plenty of support out there, right here is a good place to start...PBM is a great shoulder to have in your corner. Send me a PM or email (<!-- e --><a href="mailto:crohnolio@hotmail.com">crohnolio@hotmail.com</a><!-- e -->) if you want to talk some, and keep us updated here on the board.
Doesn't PBM's video just hit it home. Perfect song, perfect message. Awsome work
Krohn
www.ccfc.ca
www.ccfa.org
Freefall and Glide!
Brave individuals will experience a tandem skydive to help raise funds for CCFA's vital programs. All jumps are from altitudes of 12,000 to 14,000 ft. above sea level. It all starts with an extreme freefall -- and, after that intense thrill, you and your tandem instructor will then experience a quiet, serene ride, flying your parachute like a glider to landing. You will see spectacular sights of mountains, oceans, valleys, or aerial views of cities, depending on your location. Choose from seven great spots:
Skydive Jersey Shore, Farmingdale, NJ
May 13, 2006
Skydive San Diego, Jamal, CA
May 13, 2006
Skydive City, Zephyrhills, FL
May 13, 2006
Chicagoland Skydiving, Hinckley, IL
June 3, 2006
Ocean City Skydiving, Berlin, MD
June 3, 2006
Skydive Dallas, Dallas, TX
June 10, 2006
Mile-Hi Skydiving, Boulder, CO
July 15, 2006
Jump! Pledge! Cheer! Volunteer! Sponsor! Whatever you do, support CCFA in our fight against Crohn's & colitis. Become a Jumping Blue Bean™ and raise funds to help find a cure. For more information or to register online: click here, contact us at 800-343-3637, ext. 216, or e-mail greatevents@ccfa.org.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Very cool. i saw this on the website. i live in Fl, so if i am well enough, I will go to the Zephyrhills jump.
ccfa.org
http://organicconsumers.com/
PBM
Wishlist Foundation: http://wishlistfoundation.org
"Forgive every being,
the bad feelings
it's just me"
ccfa.org
http://organicconsumers.com/
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
www.quietrhythm.livejournal.com
PBM
Wishlist Foundation: http://wishlistfoundation.org
Quit going to Krystals!!!
Don't tell Fanch, but I enjoy Krystal better than White Castle.
PBM
Wishlist Foundation: http://wishlistfoundation.org
But the one chick I know seems to have a real problem eating properly.
I cant imagine having to make such huge changes in diet but if it meant not being in pain I would give it my all. It just seemed fake coming from her.
but I guess I should have also quit smoking by now.
Is there really that much of a difference?
I don't have much pain since they took some of my colon. However, not having part of your colon makes you go to the bathroom a lot. If I never sit down on the toilet again I would be a happy man.
PBM
Wishlist Foundation: http://wishlistfoundation.org
You feelin ok latley?
It's a daily battle.
PBM
Wishlist Foundation: http://wishlistfoundation.org
You're forever bookmarked in Pearl Jam history...not many of us can say that.
PBM
Wishlist Foundation: http://wishlistfoundation.org
My heart still skips a bit when I listen to the boot and hear my name...
I m determined to make it to a US show though, I ve never gone to a show in the states.
So few have understood what kind of pain Crohn's brings, and the difficulties the side effects of the medication AND the disease itself bring. The vast majority of people in this thread show the understanding and compassion I've always hoped I would find. I am very fortunate to have met people like PBM.
Gather strength from friends and family. It's needed for the long road ahead. That strength will help through the trials and tests that are in the future. I learned at a rather young age that life is to short to allow this illness to win. It's tough to adjust a lifestyle so radically, but i'd much rather have the life, then the style.
Kitchener calling Pearl Jam! Kitchener calling Pearl Jam! Please come back!
www.ccfc.ca
www.ccfa.org
The more awareness we spread, the closer we are to a cure.
PBM
Wishlist Foundation: http://wishlistfoundation.org
PBM, is the low energy due to all the calories you eat just like being evacuated before your body can use them? it seems like you must have to eat all the time.
Because I am anemic, I have to get a B-12 shot monthly because I lose so much by going to the bathroom all the time.
PBM
Wishlist Foundation: http://wishlistfoundation.org
If that link don't work...just go here:
http://www.ccfa.org/about/news/2006psa
PBM
Wishlist Foundation: http://wishlistfoundation.org
"Oh, if I knew where it was I would take you there but there's much more than this. Woh see the world."
"I know I was born and I know that I'll die. The in between is mine"
"No need to be void, or save up on life. You got to spend it all"
Minneapolis 1998, St. Paul 2003, Alpine Valley 2003, Thunder Bay 2005, St. Paul 2006 I, St. Paul 2006 II, The Gorge I 2006, Hartford 2008, Mansfield I 2008, Mansfield II 2008, Chicago I 2009, EV Solo Minneapolis 2011, PJ 20 Alpine Valley I 2011, PJ 20 Alpine Valley II 2011, Wrigley 2013, Moline 2014, St. Paul 2014
Sure hope all goes well with the medication. My brother has Crohn's, I myself have IBS & Fibromyalgia and this Jan 30 will be 4 yrs since I had 1/3 of my colon removed because of cancer. So far I am cancer free. still struggle with the other things but its nice to be alive!!!!!!