Crohn's Disease

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  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    I got something from the CCFA in the mail a couple of days ago.

    Basically, it's an essay contest where you share your UC success story.

    If you're a finalist, you receive a 3 day/2 night trip for two to the "Foundation's National Advocacy Conference IBD Day on the Hill" in Washington D.C. in May 2008.

    Winners receive round-trip airfare, hotel accommodations and $250 spending money.

    The essay doesn't have to be long...they prefer 200 words or less.

    You can submit your success essay online here:

    Celebrating UC Success

    You can nominate yourself, a supportive family member/friend, physician, support group, etc.

    Good luck to all and I encourage everyone to enter.

    Contest deadline is March 14, 2008.

    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
  • halszka123
    halszka123 Posts: 1,109
    Riverrunner wrote:
    A couple of questions. If these are too personal don't respond.

    Why is alcohol a no-no with Crohn's or is it due to the Remicade?

    Why do you have to wait until 5/12 to start the Remicade?

    I have never really understood Crohn's? I know the symptoms are similar to IBS (which B has), but is much more serious. I did not know that Crohn's was an auto-immune disease until I read your post. Is it your body attacking the lining of your stomach or something?

    My mother was a few moths ago diagnosed of Crohn's disease. After over 20 years of illness!! And the "funniest" - i was the first person who told her that she might be ill of this disease. And try to make doctors send her on appropriate examinations.
    Medicine didn't prove any influence of alcohol on Crohn's desease. But being provident doctors always recommend not drink alcohol.
    Not 10c member? Have sth to say? write to me - I'll put it on the forum
    halszka123@op.pl
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    There was a nice little segment about David Garrard during halftime of the Seahawks/Redskins game.

    It just briefly touched on his Crohn's Disease. It was nice to hear his story.

    I can't imagine being a QB in the NFL and having Crohn's.

    It mentioned that he takes an IV treatment every 8 weeks to treat his Crohn's...I'm assuming that it's Remicade.

    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
    Great segment on The Today Show about Chronic Illness. There was a woman who has Crohn's Disease on the show.

    You can view the segment by clicking on "Bonded by their survival to live"

    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
  • Chrissyb
    Chrissyb Posts: 122
    We got this package in the mail and I tried to convince my son to write one..and he wouldn't do it.. its really too bad..the kids in the NE chapter are really nice, I've met them at a symposium.

    skateboarding is just too important right now.
    PissBottleMan wrote:
    I got something from the CCFA in the mail a couple of days ago.

    Basically, it's an essay contest where you share your UC success story.

    If you're a finalist, you receive a 3 day/2 night trip for two to the "Foundation's National Advocacy Conference IBD Day on the Hill" in Washington D.C. in May 2008.

    Winners receive round-trip airfare, hotel accommodations and $250 spending money.

    The essay doesn't have to be long...they prefer 200 words or less.

    You can submit your success essay online here:

    Celebrating UC Success

    You can nominate yourself, a supportive family member/friend, physician, support group, etc.

    Good luck to all and I encourage everyone to enter.

    Contest deadline is March 14, 2008.

    PBM
    **find what you love, love what you find**
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Chrissyb wrote:
    We got this package in the mail and I tried to convince my son to write one..and he wouldn't do it.. its really too bad..the kids in the NE chapter are really nice, I've met them at a symposium.

    skateboarding is just too important right now.

    He can use Skateboarding as a part of his success story. 200 words isn't really that long...plus, he might get a free trip to D.C. ;)

    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
  • PureandEasy
    PureandEasy Posts: 5,818
    PissBottleMan wrote:
    There was a nice little segment about David Garrard during halftime of the Seahawks/Redskins game.

    It just briefly touched on his Crohn's Disease. It was nice to hear his story.

    I can't imagine being a QB in the NFL and having Crohn's.

    It mentioned that he takes an IV treatment every 8 weeks to treat his Crohn's...I'm assuming that it's Remicade.

    PBM

    Yeah I saw that too

    hope you're doing well PBM
    Don't come closer or I'll have to go
  • Chrissyb
    Chrissyb Posts: 122
    PissBottleMan wrote:
    He can use Skateboarding as a part of his success story. 200 words isn't really that long...plus, he might get a free trip to D.C. ;)

    PBM

    believe me, I would love a trip to DC, but he's 15 and knows everything so I can't win.. its too bad, he's a pretty good writer.
    **find what you love, love what you find**
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Chrissyb wrote:
    believe me, I would love a trip to DC, but he's 15 and knows everything so I can't win.. its too bad, he's a pretty good writer.

    Actually, now that I think about it, I think you can nominate him and write the essay yourself.

    It doesn't have to be a UC patient...you can nominate someone.

    It's worth a shot.

    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 had my first real run in with Remicade and infections. I developed an upper-respiratory infection in late January. It lasted, literally, 6 weeks.

    I knew that the Remicade lowered my immune system, but I haven't had to deal with any infections like this since starting it back in '05.

    I found that I was having a hard time breathing (resulting in an ER visit). My family doctor suggested a breathing test. Apparently, oxygen is getting into my body, but is having a hard time diffusing into my bloodstream.

    Family doctor suggested stopping Remicade for a while, but I don't think that is the route I want to take.

    My breathing has gotten better over the last 3 weeks...if things start to worsen, I will consult my gastro doctor and discuss the matter further. I know we are nearing the end of cold/flu season, but if you are on any immune suppressant medicine...be mindful.

    On a brighter note, we are moving to Tennessee this weekend. I've already been in contact with the TN chapter of the CCFA...it looks like they are far more active than the KY chapter. As a matter of fact, they tried to get Mike to come to UT-Knoxville for a educational program. Unfortunately, his schedule didn't allow it at the time.

    Hopefully, I can bring some awareness to western TN.

    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"

    Wishlist Foundation: http://wishlistfoundation.org
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Hello All,

    Well, since the nearest CCFA chapter is 3 hours away in Nashville, I've
    decided to take the initiative and organize a "Take Steps for Crohn's and
    Colitis" walk close to home. The folks in Nashville will be walking the same
    day, so I'm doing my part to spread awareness in Northwest Tennessee.

    I've created a team (right now, consisting of Mandy, Xavier and myself) and
    we're going to walk on Saturday, May 3rd from 1PM to 3PM on the fitness
    trail on the campus of the University of Tennessee-Martin.

    All funds raised will directly benefit the CCFA Tennessee Chapter in
    Nashville.

    If you'd like to donate, I'd certainly love your support.

    Also, if you'd like to come out and walk with us, mark your calendars for
    the first Saturday in May.

    If you'd like more information, feel free to send me an email or give me a
    call.

    To see my team page:

    http://www.active.com/donate/takestepsNashville07/Bhinson

    To Donate:

    http://www.active.com/donate/takestepsNashville07/BHinson1

    Cheers,

    Brent
    "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
  • DocChicago
    DocChicago Posts: 653
    PissBottleMan wrote:
    Family doctor suggested stopping Remicade for a while, but I don't think that is the route I want to take.
    Family doctors are great, but they should not be making decisions about highly specialized meds like Remicade. Granted, you can't get the infusion if you've got an active infection, but otherwise you should try to keep on schedule. Stopping and starting increases the chances of forming antibodies, and then the Remicade stops working as well.
    It is time to admit that we used to rock like hurricanes. It is time to run for the hills and go round and round. It is time for us to shout at the devil. We've got the right to choose it, there ain't no way we'll lose it, and we're not gonna take it anymore.
    - C. Klosterman
  • Stephen Flow
    Stephen Flow Posts: 3,327
    Maybe this is a good place to put this...

    I've been on Colazal for my Crohn's since I was diagnosed almost 2 years ago now.

    Back in November I moved and in my move misplaced my meds for about a week and a half... Not having the meds had absolutely no effect on me whatsoever... so I decided to try not taking them and see what happens... well... nothing happened... No flair up, no pain, no discomfort.

    So I have not taken them since... It has now been about 6 months of me not taking any medication for my Crohn's Disease...

    I have been having normal bowel movements since then and have not told my doctor about not taking my meds for fear he will be pissed, but my meds are very expensive and they make me extremely tired.... I know all of this sounds stupid (trying not to take meds to see what happens) but I know my body and I know when I feel ok.

    I was thinking what if my doctor misdiagnosed me?

    What do you guys (who have experience with Crohn's) think?
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    DocChicago wrote:
    Family doctors are great, but they should not be making decisions about highly specialized meds like Remicade. Granted, you can't get the infusion if you've got an active infection, but otherwise you should try to keep on schedule. Stopping and starting increases the chances of forming antibodies, and then the Remicade stops working as well.

    I guess I should have clarified...family doctor wanted me to go to a lung specialist.

    After I tapered off my inhaler my family doctor prescribed, my breathing returned to normal, so I opted not to go to the lung specialist just yet.

    My Gastro doctor has said exactly what you posted, so I was hesitant about even considering stopping the Remicade.

    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
    Stephen Flow wrote:

    What do you guys (who have experience with Crohn's) think?

    I would suggest a follow up visit with your Gastro doctor...even another colonoscopy to check on any inflammation.

    At the very least, consider contacting another Gastro doctor...there's nothing wrong with getting a second opinion.

    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
    PissBottleMan wrote:
    I got something from the CCFA in the mail a couple of days ago.

    Basically, it's an essay contest where you share your UC success story.

    If you're a finalist, you receive a 3 day/2 night trip for two to the "Foundation's National Advocacy Conference IBD Day on the Hill" in Washington D.C. in May 2008.

    Well, I was not picked as a finalist, but I did receive a certificate of participation, a one-year membership to the CCFA and a cool book called Comfort Zones which outlines and reviews over 430 public bathrooms in 15 cities.

    Some of the 3 Star (best) bathrooms in Seattle:
    - Icon Grill
    - Four Seasons Olympic Hotel
    - Westlake Mall
    - University Bookstore
    - Bon Marche
    - Rogue's Gallery

    Congrats to the winners (which, I don't think have been posted yet).

    And, I'd appreciate any support you can lend towards my participation in the Take Steps for Crohn's and Colitis charity walk.

    You can contribute here.

    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"

    Wishlist Foundation: http://wishlistfoundation.org
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    PissBottleMan wrote:
    "Take Steps for Crohn's and Colitis"

    Every event needs a soundtrack.

    "Songs and Artists That Inspired The First Annual Take Steps for Crohn's and Colitis Walk-Martin, TN".

    Enjoy.

    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
  • toronado10
    toronado10 Posts: 239
    thanks for this thread, I have an appointment to see a gastro, but can't get in until june, I've been having some pain and discomfort lately and after the tests my primary ordered he refferred me to the specialist, I don't think its Chron's from reading about the symptoms, but its comforting to see that other people have similar issues. good luck to everyone!
    Take time to see the sky,
    Find shapes in the clouds.
    Hear the murmur of the wind
    and touch the cool water.
    Walk softly,
    we are intruders,
    tolerated briefly
    In an infinite universe.
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    toronado10 wrote:
    I have an appointment to see a gastro, but can't get in until june

    I had the same problem when I was first diagnosed...I was in a lot of pain, but couldn't get in to see the Gastro doctor for like 3 weeks.

    Keep us updated.

    Be well.

    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
    DocChicago wrote:
    Remicade is one of our most powerful bullets in controlling this disease, but as an immunomodulator, it does have its drawbacks.


    Just out of curiosity, have you come across any serious cases of patients taking Remicade.

    I've frequented a few other health-type message boards and there are some folks that advise against taking it.

    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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