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Im Only Fourteen.. :/

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  • #1

    Im Only Fourteen.. :/

    Hi.(: my name is emily and i have been diagnosed with IC about for a year now. i am currently home-schooled, have some anxiety, and is all caught up on this syndrome.
    Since i was young, my parents and teachers have noticed me going to the bathroom quite frequently. i didnt reall show more symptoms until i was ten. i now go to the bathroom about every twenty minutes(on a good day).on bad days it can be as fast as eight minutes.
    i am worried this will take over my life.
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  • #2
    Hello and

    Please do not get discouraged.. There is so many IC treatment options now.. Just work with your Dr and also be your own advocate when it comes to your body.. If you need anything just ask..
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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    • #3
      I agree Leelee. there are never any dumb questions, or does sound stupid questions. You know hou you feel, and if you think you might forget to ask the dr make a list as you think of them. All the ladies and gentlemen here are great people full of information that may help you.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        Lately there have been a few teenagers on the board. Maybe one of them will respond to your post and you can exchange experiences, it is helpful to have someone to talk to that has something in common. We all have IC in common but I would think it would be good for you to talk to someone your age about how you cope with your situations.

        We are always here for you and can answer your questions to the best of our ability. Leelee is right, there are a lot of good treatments out there. It can take some time to find the right one so hang in there. You can have a wonderful life.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment

        • #5
          Hi Emily

          I am glad you are being home-schooled. Your parents must love you very much and this helps you from not having to go through so much trying to get through school. I hope you have met some other home-schooled friends your age. What do you like to do in your spare time? It is really good to find a hobby you like to get your mind off of this. Can you write, draw, paint, read, crochet, scrapbook, cross-stitch? Anything to get your mind in a new direction.

          Have your parents helped you to get to a good urologist or gyn? I just read in the ICA magazine about what I think may be a compassionate dr. Not sure if you would live around there, but it is important that you find a dr who will take younger patients.

          Have you tried any types of treatments yet? Oh, sweetie, I have two girls and I know how difficult it is with this. I pray for no new people to get this and I will pray for you to find some treatment that will help you. Did you have UTI's when you were little? I hope you are not having any pain.

          The other ladies gave some good responses and I really hope one of the teenagers can respond as well.
          Teresa

          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

          Comment

          • #6
            I agree that it's good that you can be home schooled. It also makes it easier to stick with the IC diet. I hope you feel better very soon.

            Warm hugs,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            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]

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

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            • #7
              what kind of treatments are you on? there are a number of treatments that can help you. also i agree with everyone else stick with the ic diet, also this is an excellent support forum. i hope and pray that things will get better for you keep us posted, your fellow sister of this ic.
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              • #8

                Thanks to everyone who is posting.
                I am currently taking elmiron, neurotin, elavil, valium, just started birth control, and some vitamins.
                I have taken up yoga on weekends and my mother and I take road trips every two weeks up to UVA where my Uro is.
                I dont go out to much, but my friends from public school are in-touch and they help alot.

                Comment

                • #9
                  Great that you are doing yoga.

                  On any days where you don't feel strong enough to battle this, we can send you some of our strength - like today as it happens I don't need all mine, I have some extra - I can send it!

                  I wonder if you mom has had any contact with Boston Children's Hospital. They are doing some research about interstitial cystitis and genetics. The study doesn't involve taking any drugs or getting needles or getting poked - some kids are taking part, but I am doing it too: I did a phone interview, filled out some forms, and they sent me a Fed Ex package because they want me to send my spit (yes, really!) and my urine to them in Boston.

                  One upside - this will create a benchmark for personal strength that you will have your whole life.

                  Hang in there Emily.
                  ______
                  Severe IC developed fairly quickly, autumn 2010.
                  So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                  - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                  - Methadone 9 ml/day
                  - Instillations:
                  - 40ml Kenalog (steroid for inflammation) 2 x per
                  week, along with rescue cocktail of heparin,
                  lidocaine, sodium bicarbonate
                  - 20ml Uracyst, monthly @ $100/per
                  - Depo lupron injections for endometriosis, monthly @ $88/per

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