Anyone else with crohn's?

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Wilhellmina
Wilhellmina Posts: 757 Member
in Motivation and Support
I have had troubles for quite a while already, always dismissed, just take a pill and it will be solved, until I ended up in the hospital a week ago, dehydrated, sodium-potassium levels too low. Finally I was send to a specialist and now after all these years we know crohn's disease is causing all my troubles. I would like to find more people who got the same condition for more understanding and the right kind of support.

Is there anyone out there?

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  • michael1976_ca
    michael1976_ca Posts: 3,488 Member
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    my mom has it. she doesn't have any of the small intestine and only six feet left of the large. she has an a bag now. but yeah my mom had it since 1988 been in and out of the hospital. but you can still have a healthy life
  • Wilhellmina
    Wilhellmina Posts: 757 Member
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    Awww, I'm so sorry for your mom, that must have been awful!

    What I just notice is people only cheer when you burned a ****load of calories, exercising your butt off and/or lose a lot of weight. But for me that is not so simple. When I have a flare I lose weight, yes, but then I get to hear I eat too little. No surprise there for me, but do they understand how hard it is to eat properly? Where the flare eases the weight goes up again, even though I do not change my diet. And there are periods I am tired from getting up already, so the only exercise is getting through the day? That's why I am looking for people who understand better how it can be.
  • RodaRose
    RodaRose Posts: 9,562 Member
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    I have a friend who moved away but I hear from him once in a while. He has lived with it for 30 years and is doing fine. Doctors have better medicine and more information than when he was first diagnosed.
    A suggestion: consider putting your new diagnosis in your profile. Or change your settings so that people do not see your weight loss in your feed.
  • paperpudding
    paperpudding Posts: 9,068 Member
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    My nephew has this OP.
    He is 19 years old. Has to be very careful about what he eats and there are so many things he can't eat.
    He struggles to keep weight on.

    He is at Uni and doing really well with his studies - but, yes, ongoing health issues .
  • Wilhellmina
    Wilhellmina Posts: 757 Member
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    I am in the middle of a flare at the moment. I barely can't eat anything. I have been thinking of trying the SCD diet. I have heard positive results from this, also for people with crohn's.
  • cmazurek85
    cmazurek85 Posts: 99 Member
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    My husband has pretty bad CD. It's tough to keep the weight on him, especially when he has a flare (which is more often than not.) He takes remicade every 4 to 6 weeks. He still has a good quality of life, but he has to be very very careful about what he eats. OH! and he also has celiac disease. He basically eats a SCD diet, though I dont officially follow that. We stay away from processed food as much as possible.

    I'm here to talk if you need it! add me! I feel like I know as much about CD as he does! Good luck!

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