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My Momma wants me to reroute my urine.

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  • My Momma wants me to reroute my urine.

    hi, im emily. im fourteen, and have been diagnosed with IC forabout a year now.
    my momma came to me this morning with an idea for treatment. she ha been talking to my uro, and looking online about the Indiana pouch diversion.
    she said i could go back to school, and hang out with friends, and get back to a normal life. but i also read online that i have to empty my urine through a hole in my stomach with a catheter? i am absolutely terrified of catheters , and my stomach is very weak. im scared, and worried. anyone have any insight on this?
    please write back.(:

  • #2
    I think it would be a very good idea to talk with your mother about seeing another doctor for a second opinion before seriously considering this as an option. There are some instances when it's the absolute best solution, but there are many treatment options to be considered first.

    Sending gentle hugs,
    Stay safe

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    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.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      I agree with Donna speak to other Dr's this is a very big step. There are lots of things to try, I of course do not know what you have tried, but even though you are young it is your body. It is also major surgery and major recovery.

      A lot to consider for such a young person.

      My son was house bound from age 9 - 15, it was his body for the most part I let him tell me when things were bad enough to go to ER, and what tests meds etc he wanted to try.

      I would give him facts as they were given to me then he would do his own research.

      Please just get well informed before you decided, and see as many Dr's as you need to be comfortable with your decision.

      A lot of people here have had IC since their teens me for one, and I can't say it has always been an easy road, but I have had and have a happy life, and I did not do the type of thing you are being asked to think about, it maybe the answer for you, but you don't need to decided right this min.
      I know your mom see's you suffering and she wants it to end, it's your body.

      Bless you MG
      My are with you all. May you all find a way to peace and joy in your lives.


      • #4
        Thanks for the support.

        i am happy to know that i have great support here. i am not going through wit anything until i am 100% positive it is the right desicion for Me. its rather depressing being home alone all day, everyday. and this being an entire year with out going to school, i am missing my friends terribly. my mom tries so hard to give me every option there is out there, and provides me with so much.


        • #5
          I hope they find you some meds that work really soon. Also, try physical therapy if you can get a referral. It has helped me to have a very normal-ish life. It's worth a shot before having that surgery. I, for one, hope to never have surgery again after my hydrodistension.

          Prayers for you young lady!
          Your Friend,

          Diagnosed: 10/16/09

          Elmiron, 100mg 2x per day
          Imipramine, 10 mg per day
          Diazepam 10 mg for sleep
          Zovia, birth control (ongoing-no periods)
          Hydrocodone, 2 pills a day (at any time of day)


          • #6
            You are too young to lose your bladder. There are too many options to treat your bladder before thinking about something so extreme.
            Researchers are looking for a cure. Don't give up to soon.


            • #7
              Bladder diversion and/or other surgical procedures are ONLY considered after you have tried and failed all of the easier treatments... and since you've been diagnosed only a year ago, there are undoubtedly a few things that you could still do. I would be more than happy to talk with you and your mom by phone about the various IC treatments, your situation, etc, etc. My first bladder symptoms began in 7th grade so I feel your frustration and struggles. Please let me know if I can help.

              Jill Osborne
              ICN President & Founder

              PS. I begged my doctor to remove my bladder my first year of bladder pain. He refused, stating that I hadn't tried enough therapies and, thank god, he was right. I had great success using antihistamines and the diet! It's fairly normal to think about the extreme therapies.. but there really are much easier things that should be tried first.
              Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

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              Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.