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  • Hi I'm new

    Hello Everyone,

    My name is Julie. I'm Noodlehead's identical twin sister. Emily has been dealing with IC for the last two years now. I thought I would get on here and look at what others have to say about their pain. It's soothing to see that others are having the same symptoms so Emily does not feel alone in her journey through this painful, frustrating, exhausting path of IC. For some odd reason I'm not showing any signs of IC. I want to learn more about IC so that I can go through this with her, and so she knows I'm here, and that I have a better understanding of it. IC sounds like it has many culprits that feed on it. I've been reading the other posts and there are so many different varieties of symptoms that can go along with it. Emily has been going from one Doctor to the next and I can tell it's so frustrating to not get answers and relief. I wish all of you the best and I hope you all find strength in each other as I find in each of you. grouphug

  • #2
    Welcome to the IC Network. Your sister is very fortunate she has you.

    There are many things you can do to help her, but the biggest thing is to understand that she doesn't always feel good and can't always do the things she wants to do. It can be so much help to have a family member to support her when she's having a tough time.

    Another thing you can do is to look at the IC Diet in the Patient Handbook --- and be sure that there are always foods and drinks available that she can have. I have a daughter who keeps bottled spring water in her fridge and I can't tell you how much that one little thing is appreciated.

    I do hope you don't also get IC. I know you are very similar genetically, but I firmly believe that there are other factors also involved. My IC developed after a major abdominal surgery so I feel it was the trauma of the surgery that brought on the IC symptoms.

    Sending warm hugs,
    Donna
    Stay safe


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    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

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    • #3
      Hi and welcome to the ic network. Your sister is very lucky to have you. I finally found a uro who understands and treats ic and is taking small steps with me. I am on neurotion, atrax and amptrypline with the ic. I am on darvocet for the pain. I had remissons off and on fr years. I was diagonsed in the early 80's and the remisson until 98 and then nothing worked. Uro thought it was something else with the pain. Last summer I went through bouts with kidney stones, adominal pain and chronic utis. In Feb of 2003, diagonesed with icagain. It came back full force. I just had adhesions removed in april from my stomach, bladder, bowel and pelvic area. I do flare from time totime. I try to stay away from soda and garlic and certain tomato sauces will make me flare. Stress is a big factor in my life and that causes flares. Keep us posted and let us know how you are doing and your sister is doing. Hang in there.There is hope. This too shall pass.
      Hang in there , There is hope.
      There is hope. Prayer works.

      Love, Debbie

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      • #4
        Julie,
        what a wonderful sister you are, if you have questions please ask. we are not doctors but, we can share our own experiences..
        Brat
        'The will of God will never take you where the Grace of God will not protect you.'

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