Crohn's Disease

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  • tag
    tag Posts: 3
    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
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    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. :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
  • Federico
    Federico Posts: 7,916
    jejeje...cool...as an architect, i would really say that the mandalay bay are the best looking ones...
  • Stephen Flow
    Stephen Flow Posts: 3,327
    Hey PBM,

    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
  • share
    share Posts: 551
    PissBottleMan wrote:
    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. :o

    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
  • Surf Life
    Surf Life Posts: 50
    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.

    peace
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Surf Life wrote:
    As someone with rheumatoid arthritis

    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"

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

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

    Wishlist Foundation: http://wishlistfoundation.org
  • lowbudgetlush
    lowbudgetlush Posts: 612
    PissBottleMan wrote:
    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.
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    lowbudgetlush wrote:
    How do you get through it at concerts, entertainment events and the like?

    Normally, I take two Immodium, eat a mild breakfast and then just drink water the rest of the day.

    That's worked for the past few Pearl Jam shows I've been to.

    I have to go out on-location with my work and sometimes I forget to take my Immodium, so I have to seek out the nearest bathroom available. It used to bother me, but when you have to go...you have to go.

    The main thing is monitor your diet...know which foods set you off.

    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
  • fanch75
    fanch75 Posts: 3,734
    White Castle - the cause of the first documented case of Crohn's Disease.
    Do you remember Rock & Roll Radio?
  • demetrios
    demetrios Posts: 97,871
    my last 'got guts' blue braclet broke on me today. :(
    i've had it on since the '05 toronto pre-show at the loose moose.
    gotta make an order this week for a few. :)
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Just ran across something interesting. The little girl from, Poltergeist, Heather O'Rourke was diagnosed with Crohn's shortly before she died.

    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
  • lisam
    lisam Posts: 75
    Back history..

    It hit on the day of my dad's 50th. We were taking him out for the day and on the 1 hour drive to get there i had to stop in at service stations 3-4 times to go to the bathroom, the rest of the day i was feeling terrible but, basically ok because i was to scared to eat so i was empty.

    The next few months i didnt do anything about it and as a result i started having to skip work because i couldnt hold on long enough for the 30 minute drive to even get there, also i had to cancel the 6 week tour i had book for Europe as it was a bus tour with strangers and.... not a good idea at that time.

    Over the next 2-3 months i lost probably 20-25kg because i ate so little so i wouldnt have to go to the bathroom. I was weak, looked sickly and really starting to get down abut not being able to go out with friends or family.

    I eventually decided i had to do something so i had a beium x-ray, endoscope and colonoscopy which showed a problem but the doctor refused to say anything more then its either Crohns or IBS and put me on sulfur tablets with made me feel terribly sick.

    Luckly my symptoms are only the stomach pains and diarrhoea so now i take immodium twice a day and watch what i eat (nothing spicy, rich or to heavy) with keeps it somewhat controllable, but still not enough that it isnt a issue and i dont have to suffer from "bathroom awareness".



    Story finished, sorry it went so long.. but i vow i will take that European holiday one day
    Shot me with your funk gun
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    lisam wrote:
    Luckly my symptoms are only the stomach pains and diarrhoea so now i take immodium twice a day and watch what i eat (nothing spicy, rich or to heavy) with keeps it somewhat controllable, but still not enough that it isnt a issue and i dont have to suffer from "bathroom awareness".

    You don't have to suffer through this. Don't feel bad about seeing another (or several) doctors in order to find the help you need.

    There have been many strides in medicine that help ease the symptoms of this terrible disease.

    When I was first diagnosed, I was taking 20 pills of Pentasa a day. Now, I get a Remicade infusion every 8 weeks. My energy is up, my stomach pain are non-existent (knock on wood) and my diarrhea (while still prevalent ) is not as bad.

    If you need help finding a good doctor, contact someone from the Crohn's and Colitis Foundation or your country's equivalent.

    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
    Health Talk has put up a slideshow of McCready's interview from last month.

    It's a nice breakdown of the one-hour interview.

    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
    My son is currently on the Remicade treatment (as well as a handfull of pills) he's been doing really good. Before he started the infusions his SED rate was at 17 .. Monday he had his 8th treatment and its down to 2 ..
    **find what you love, love what you find**
  • PissBottleMan
    PissBottleMan Union City, TN Posts: 4,155
    Chrissyb wrote:
    My son is currently on the Remicade treatment (as well as a handfull of pills) he's been doing really good. Before he started the infusions his SED rate was at 17 .. Monday he had his 8th treatment and its down to 2 ..

    I had another treatment on Monday. I've been on Remicade for the past 2 1/2 years and I sometimes forget how well it's working for me.

    There are times right before my treatment or just after that my energy levels are depleted.

    I've learned to live with the constant bathroom visits, but the lack of energy is what really gets me.

    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
    This could be one of the greatest invention for Crohn's patients yet.

    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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