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  1. #1
    Join Date
    Jun 2006
    Location
    The middle of North America
    Posts
    776
    LBTC

    You and your diagnosis have been in my thoughts. After years of misdiagnosis and too many intestinal surgeries my BIL was finally diagnosed correctly as having Crohn's along with my nephew.

    I have seen firsthand how difficult a disease it can be to live with but also how it can be managed successfully for the most part and people can still live active and fulfilling lives.

    My thoughts and prayers are w/ you as you learn how to manage your body and life in a new way.


    It's about the journey and being in the moment, not about the destination

  2. #2
    Join Date
    Jan 2005
    Location
    Vernon, British Columbia
    Posts
    2,226
    Quote Originally Posted by eclectic View Post
    LBTC

    You and your diagnosis have been in my thoughts. After years of misdiagnosis and too many intestinal surgeries my BIL was finally diagnosed correctly as having Crohn's along with my nephew.

    I have seen firsthand how difficult a disease it can be to live with but also how it can be managed successfully for the most part and people can still live active and fulfilling lives.

    My thoughts and prayers are w/ you as you learn how to manage your body and life in a new way.
    Thank you, Eclectic!

    So far, so good! The drugs really help - since I started them I've definitely had more good days than bad! It will take time to understand what I can and can't do and eat; and to learn if these things are all the time, or just sometimes. But I'm up for the challenge and thinking about the race(s) I want to do this year.

    How are your BIL and nephew doing? How long since they were diagnosed?

    Hugs and butterflies,
    ~T~
    The butterflies are within you.

    My photos: http://www.flickr.com/photos/picsiechick/

    Buy my photos: http://www.picsiechick.com

  3. #3
    Join Date
    Mar 2006
    Location
    Minneapolis, MN
    Posts
    213

    Smile

    LBTC,

    Sorry to hear about your diagnosis. It's hard to hear that you've got a disease that you will always have to live with. But if you find the right medication, and identify the foods you can't eat, you will be just fine.

    It definitely puts you in tune with your body, if you weren't already. And even without a food diary, you will gradually get to know which things will hurt you and which are okay to eat. When I first got diagnosed with colitis, I went for months without eating certain things that I suspected may be bad. This was during an active flare up, so it was pretty easy to not want to eat anything, but in the end it was a good experiment, because now I know what's okay for me and what is going to be problematic.

    And it's different for everyone. My sister has crohns, and she can't have coffee, but beer is okay. I'm just the opposite, coffee is fine, but carbonation is terrible on my system.

    Even when I'm in remission, there are certain foods that will give me a gut ache. Not cause a flare-up, but just great discomfort.

    I hope you find what works for you soon! Definitely stay active, I'm sure that it helps.

    Take care,
    kate

  4. #4
    Join Date
    Apr 2006
    Location
    somewhere between the Red & Rio Grande
    Posts
    5,297
    Quote Originally Posted by LBTC View Post
    Thank you, Eclectic!

    So far, so good! The drugs really help - since I started them I've definitely had more good days than bad! It will take time to understand what I can and can't do and eat; and to learn if these things are all the time, or just sometimes. But I'm up for the challenge and thinking about the race(s) I want to do this year.

    How are your BIL and nephew doing? How long since they were diagnosed?

    Hugs and butterflies,
    ~T~
    T- I was thinking of you this week. How are you feeling?

    One thing that made me think of you was my DH. We saw a dietician this week and he is currently keeping a food journal. His Crohn's led to a fairly severe amount of inflammation in the Ileum and it seems the Remicade IV therapy is helping. However, he is still experiencing pain. The dietician is hoping after two weeks to see a pattern, if not he will just keep going. Her big suggestion for him right now: cut down carbonated/caffeinated beverages.

    Since you mentioned figuring out your trigger foods, I thought this might be something you should do. You may already be doing it. ((hugs)) Hope the medicine is still helping!
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  5. #5
    Join Date
    Sep 2005
    Location
    Trondheim, Norway
    Posts
    1,469
    carbonated => gas, which can give pain, especially if you're already a bit tender. Same goes for other foods that cause gas (cabbage, peas, beans)
    caffeine => dehydrates, which is tough on your mucous membranes when they're already struggling.
    And then there are mechanical irritant foods (e.g. nuts) and foods that bulk up make your intestines work harder, which again can give pain. So try going low fibre for a while to go easy on those inflamed intestines.

    The good news is, that once the meds have got his guts in remission, he can try tasting his favorite foods again. I've been staying low fibre for months now, but lately I'm ok with the odd tangerine or handful of nuts or a latte at lunch or ... whatever. I just don't overdo it. Yet.
    Half-marathon over. Sabbatical year over. It's back to "sacking shirt and oat cakes" as they say here.

  6. #6
    Join Date
    Jan 2005
    Location
    Vernon, British Columbia
    Posts
    2,226
    Thanks for asking, Amanda and for the encouragement, everyone!

    It is rather a roller coaster, but who wants a level ride? So far I've discovered that I'm really not good at keeping a food diary, but I am pretty good at putting my meals I eat at work in 1/2 cup containers - I have about three of those plus a banana and some other healthy snacks during the day. Still need to eat every 2-3 hours, but I'm doing pretty well at small portions. (except over the holidays, but that's another story!)

    A co-worker who has colitis told me his story just the other day and highly recommended a naturopath in Kelowna. My CW told me that he only saw the NP to get his wife to stop nagging him, and he was totally sceptical and refused to tell him about any food allergies he already knew about. The NP used electrodermal testing to determine my CW's food sensitivities and was dead on accurate. The scale even told him which foods are never, which are almost never, which are seldom and which are occasional once you're back to better health. Not only did the colitis flare he was in at the time, that drugs were not treating, clear, but his colitis seems to have stayed in remission for 5 years (maybe it's longer...). But the cool thing is, this also eliminated his eczema, and virtually eliminated his asthma! Now, looking at this guy I would never have guessed that he has one single health problem...he's a strapping cowboy working in a forest industry job. So there ya go.

    I have an appointment with the NP on Jan 29. I've asked for the same testing at the same time as the initial consult since I have to take the morning off work and drive to the next city to see him. I'd like to think I can avoid the elimination diet and food reintroduction by seeing this guy, although I'm thinking I need to try it a little bit.

    Have any of you done or heard of electrodermal food testing?

    If I'm going to eliminate only one food this coming week, what should it be?

    As far as staying active - we are going snowshoeing later today, I rode the bike on the trainer twice this week, the kickboxing place opens on Monday, so I'll check that out. I have pushed through the fatigue a bit, but realize I need to not overdo that....tricky balance, but I'll get the hang of it!

    Hugs and butterflies,
    ~T~
    The butterflies are within you.

    My photos: http://www.flickr.com/photos/picsiechick/

    Buy my photos: http://www.picsiechick.com

 

 

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