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Painless for 5 years!!!

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  • marycat2007
    replied
    Thank you for having the courage to undergo this operation. It is inspiring that you are now pain free. From what I read, it sounds like a long recovery, but living with severe IC is no way to live and worth the minor complications of surgery.

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  • sailawaygrl
    replied
    Thank you for sharing your story. I am glad you are doing so well. It is very impressive that you did so much research on your own at such a young age. I think learning everything possible about IC is the key to getting better and regaining a pain free life. I am not there quite yet but I do have many more good days than bad lately.

    I wish you continued good health.

    Sandra

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  • bubbe1
    replied
    painless for five years

    Rebekah,
    It's wonderful that you found something that worked so well for you and impressive, that age 14, you were doing all that research and had so much knowledge.
    Thanks for posting your positive story.
    Laurie

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  • ICNDonna
    replied
    Thank you for sharing your success.


    Donna

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  • RebekahB
    started a topic Painless for 5 years!!!

    Painless for 5 years!!!

    I was diagnosed with IC at the age of 13. I was in severe pain the majority of the time. I managed to graduate high school with honors, but that was due to the support and understanding of my teachers. I could barely make it to class.
    I tried every medication they could come up with, Elmiron, anti-depressants, pain medication. I was on Methadone for pain as a narcotic at 15. The Duragesic Fetanyl Patch was the only thing that worked close to as well as that. I spent all four years in high school and two years in college on these narcotice. They made me a different person. I was like a zombie and always tired. I was also extremely depressed.
    This isnt something that is easy to deal with at any age, let alone as a young teenager. Five years a go, I spent the week before Christmas, at the ripe old age of 20, in the hospital having my bladder removed and replaced with part of my small intestines. It was our only hope, the pain was too bad. None of the twenty-something surgeries I had done prior had even begun to help.
    Its been five years now without the severe pain of the Interstitial Cystitis!!!! I have been able to live my life! I spent two years travelling the world, being that I couldnt even make it out of bed for the seven years prior. The surgery was not easy and I would not recommend it for everyone, but it was my light at the end of an extremely dark tunnel.
    There were multiple complications with the surgery. A day after arriving home from having it I ended up back in the hospital, where I remained for Christmas and New Years. My friends and family really helped me through the severe pain and lond recovery. I spent a few months in pain, hoping that this would work.
    Now five years later I do have some pain in my kidney area (I have a doctors appointment for it next week). I also have UTI's about 3 times a year, but the pain is very minimal and I know as soon as I have one. Bactrum or Amoxycillin always help. I also do have to catheterize a couple times a day, but can urinate normally as well. I do this just to make sure to completely empty the bladder. Its very easy for me, and really doesnt affect me at all.
    I remember sitting in my bedroom at my parents house at fifteen, crying and wondering if this pain would be forever. I just want to let people out there know that its not. Find a good doctor. It took me multiple tried. At 14 I heavily researched IC and knew everything I could about it. I asked all the questions I needed. I found many doctors frustrated and confused as to what they should do. I saw many specialists, and I found a urologist that knew what he was talking about. I saw hime so much he became like family, but it is because of him that I am able to live a normal life today.
    It can get better! It may take medicine, or surgery, but there is something. It helped to speak with people who went through the same disease I did. Everytime anyone told me they understand what I was feeling, I would get angry, until I spoke with people who did.
    I just want people with IC to know that there is hope out there. Its not going to last forever. It is excruciatingly painful, and I would not wish it on anybody, but there is hope. I am very, very, lucky to have been able to find the doctors I did and have this surgery, and everyday I wake up knowing that! I hope everyone can find relief like I did!
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