Crohn's Disease

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Comments

  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Riverrunner wrote:
    For a while he hated to get out in public because he never knew when he would "have a spell." So I feel for you guys.

    Like I mentioned earlier, unless I am familiar with the surroundings, I don't go to many social functions.

    If I know I am going to be out, I take the necessary precautions.

    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
  • DopeyBoy
    DopeyBoy Posts: 170
    You guys are troopers. I've known a few people with Crohn's, and I know its no fun.
    So you're going on Remicade though eh? God, I hope you have good insurance! I work in insurance, and I know that stuff is pricey! Also hard to get covered.
    Anyway, keep on trucking guys!

    Peace
    :-p
    "Six million dollars we turned down, to prevent our song to be sung by a cock" E.V. - San Diego, June 5, 2003
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Yeah, I have insurance and luckily, I have met my deductable this year, so it's 80/20 from here on out.

    How much does one treatment cost?

    I have to stay on top of my coverage because I have a pre-existing condition. If I drop insurance for one day, I won't get covered.

    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
  • JenInTheBx
    JenInTheBx Posts: 293
    My sister had problems with her stomach for YEARS... she would constantly be crying in pain, but never went to a doctor to get it checked out. I read some of your stories a year or so ago, heard about Mike, etc... and finally got my sister to go get checked out, and she was diagnosed with IBS. Now that she knows what's wrong, she takes care of herself better. I know that's not as bad as Chron's, but after seeing what she went through, I commend you all for being so strong and also for sharing your stories with each other- it's probably a great support system, and it gets the word out. :)
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    JenInTheBx wrote:
    My sister had problems with her stomach for YEARS... she would constantly be crying in pain, but never went to a doctor to get it checked out. I read some of your stories a year or so ago, heard about Mike, etc... and finally got my sister to go get checked out, and she was diagnosed with IBS. Now that she knows what's wrong, she takes care of herself better. I know that's not as bad as Chron's, but after seeing what she went through, I commend you all for being so strong and also for sharing your stories with each other- it's probably a great support system, and it gets the word out. :)

    Just knowing that you're not the only one helps tremendously. When Mike announced that he has dealt with the diesease for over 15 years, I felt a sigh of relief.

    He has brought awareness...I know that I'm not alone. Plus, there's been more discussion on this board and more charitable events.

    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
  • dontgimmenolip
    dontgimmenolip Posts: 198
    PissBottleMan wrote:
    I commend you on your strength. I am really stubborn when it comes to this disease. I don't want to give up McDonalds hamburgers, Mountain Dew and Chocolate.

    I know it's bad for me, but I enjoy those things.

    A proper diet is extremely important, but I am locked into this fast food mentality.

    Thanks for sharing your story. It makes dealing with the disease much easier when you know there are other folks dealing with the same issues.

    PBM

    I know how you feel about having to give things up. When my doc told me that the reason my right foot kept swelling out of nowhere was gout, I was really bothered. I was under the impression that gout was only something that 60 year old boozehounds contracted.

    Then he dropped the bomb on me about what I'm not supposed to eat. I haven't had shrimp in two years, and I'm supposed to go real easy on beef.

    I wasn't much of a drinker before, but since my gout diagnosis, I won't drink anything but an occasional glass of wine. Thankfully, by being careful about what I eat, my flare-ups are pretty much just stiffness in my toe and the occasional ankle pain.

    I wish you the best of luck PBM, and I commend your strength.
    - Justin

    You think the Slayer tour is out, or what?

    "Finally! I get to save the earth with deadly lasers instead of deadly slide shows." -- Al Gore.
  • jgcartman2
    jgcartman2 Posts: 7
    was the one huge difference when I was diagnosed.

    The doctor just looked at me.....cold faced......(of course i was on the edge of freaking out) and he says "you'll be going to the bathroom quite a lot more."

    I'm thinking.....thats why were cold faced??? buddy please my time in the bathroom is what I consider "al bundy" time but the only thing i didn't like was second guessing going out much like PBM I always had to be wondering just when i'd have to go to the bathroom again. But you learn to live with it like all the other things.....I have people say "how can you go inside a public washroom and do you business??" I just say "hey its flushes.....works for me!"

    i've had to keep a very broad and sometimes twisted sense of humour with this whole thing and that is one sure cure because nothing kills laughter (well except for a bad joke that is but then you just end up laughing at the person that told it....much like now.....i'll stop)

    Thanks again,

    Josh or J
    she lies and says she's in love with him.....can't find a better man!
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    dontgimmenolip wrote:
    I know how you feel about having to give things up. When my doc told me that the reason my right foot kept swelling out of nowhere was gout, I was really bothered. I was under the impression that gout was only something that 60 year old boozehounds contracted.

    Then he dropped the bomb on me about what I'm not supposed to eat. I haven't had shrimp in two years, and I'm supposed to go real easy on beef.

    I wasn't much of a drinker before, but since my gout diagnosis, I won't drink anything but an occasional glass of wine. Thankfully, by being careful about what I eat, my flare-ups are pretty much just stiffness in my toe and the occasional ankle pain.

    I wish you the best of luck PBM, and I commend your strength.

    Hey man, cheers to you.

    It's all about having great friends and family who understand and support you.

    "I'm lost, I'm no guide...but I'm by your side. I am right by your side."

    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
    jgcartman2 wrote:
    But you learn to live with it like all the other things.....I have people say "how can you go inside a public washroom and do you business??" I just say "hey its flushes.....works for me!"

    i've had to keep a very broad and sometimes twisted sense of humour with this whole thing and that is one sure cure because nothing kills laughter (well except for a bad joke that is but then you just end up laughing at the person that told it....much like now.....i'll stop)

    Man, I get that question a lot: "How can you use a toliet in this place?" If I don't, I'll shit my pants.

    :D

    At parties, I stink up the whole house, but I joke about it. My friends and family know and they are supportive and joke with me.

    Attitude....it's what it's about.

    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
  • rarghrargh-brownstar
    rarghrargh-brownstar Posts: 1,272
    Thanks soo much for sharing this!!! I dont know if this disease gets enough attention so thanks for letting us know of it, and how you are doing.

    Hope that you keep gettin better! :)

    As much as i love our beer......:rolleyes:.......I think you will be juuust fine :D
    Canadian Dry Gingerale is also great :d


    This is awesome! I am sure that there are many others going through this and feel better that they can relate with someone. Thanks again.
    Rarghstarfarian.
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Well, I just downed a big container of Barium. I'm off to the doctor to get my C/T scan and some blood work.

    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
  • jgcartman2
    jgcartman2 Posts: 7
    that Barium absolutly disgusting stuff

    they give you the super-xlax yet aka Rocket Fuel?
    she lies and says she's in love with him.....can't find a better man!
  • JASGMMEV
    JASGMMEV Posts: 19
    PissBottleMan wrote:
    Well, I just downed a big container of Barium. I'm off to the doctor to get my C/T scan and some blood work.

    That Barium f---ing sucks! Hope the scan shows what you and your doc want it to.......
    "Be bold and mighty forces will come to your aid," Goethe said that.
  • Riot_Rain
    Riot_Rain Posts: 348
    Good luck, PBM.

    Respect.

    Riot_Rain :)
    Like a cloud dropping rain
    I'm discarding all thought
    I'll dry up, leaving puddles on the ground
    I'm like an opening band for the sun
  • DocChicago
    DocChicago Posts: 653
    What a heartwarming thread. I don't visit enough to know that all you guys have Crohn's (or IBS). I have taken care of plenty of hospitalized Crohn's patients, and there will be many more (I'm getting gastroenterology training starting in July... guts n' butts!). Remecaide is one of our most powerful bullets in controlling this disease, but as an immunomodulator, it does have its drawbacks. I hope it does the job, PBM.
    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
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    JASGMMEV wrote:
    That Barium f---ing sucks! Hope the scan shows what you and your doc want it to.......

    You know, after fasting last night, that Barium didn't taste too bad this morning. They have really improved on the taste.

    DocChicago, thanks for the kind words. Good luck on your training.

    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
  • holapearljam
    holapearljam Posts: 62
    PBM,

    I hope you get some good news. I have been in remission with IBS for 2 years now (it stopped right before the 03' shows I attended). I had it non-stop, daily for about a year. I completely understand about being depressed. It will make you want to be a recluse.

    The thing that helped me the most was managing work-related stress. I still splurge a little on the bad food (Mexican is my downfall), but I have learned when my body is telling me to back off. Might I also suggest watching "Supersize Me". That movie is quiet enlightening on the fast food industry and what it can do to your body. Anyways, good luck!!

    holapearljam
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    holapearljam wrote:
    The thing that helped me the most was managing work-related stress. I still splurge a little on the bad food (Mexican is my downfall), but I have learned when my body is telling me to back off. Might I also suggest watching "Supersize Me". That movie is quiet enlightening on the fast food industry and what it can do to your body. Anyways, good luck!!

    You know, I deal with stress pretty well. I am pretty laid back most of the time. I think that helps out with my stomach.


    I've seen Supersize Me and it really hits home. I don't eat as well as I used to. When I lived at home, I always had a good meal. Now, my wife and I usually just throw something together.

    Part of the blame lies with me. I just don't want to give up some things.

    Thanks for your encouraging words.

    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
  • polaris
    polaris Posts: 3,527
    to pbm and all crohns peeps,

    a good friend of mine has had crohn's since Univ. with another friend just diagnosed ... she has been working for the CCF in Canada for some time ... she goes on and off steroids and she seems to be doing pretty good ...

    the one piece of advice she would give is to address your diet as much as possible ... unfortunately, that means eating the basics and then gradually introducing foods until u figure out what u can and can't eat ... she feels that if she did this earlier - it wouldn't be where it was now ...

    good luck
  • Cropdust
    Cropdust Posts: 4
    Thumbs up to all in here..

    I have crohn`s too. Was at my doctor today as i do every half year. My girlfriend and me talked last night about if i could start to slowly stop with the pills (immurel 4 years) because we want to start making baby`s next year. Instead he told me to double my dose because i have been flaring up since januar. Thats cool im a plumber so i always have a toilet nearby ;-)

    anyways it was a downer..

    PSB youre the man keep the spirit high..

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