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  • a high school senior with IC

    hi everyone,
    i am about to graduate from high school, but i've had ic since i was 15. i still haven't found anything that really helps my pain, frequency, and urgency, and i've been thru almost all the treatments in the book. how do u guys manage to live day to day without giving up, like i have done so many times? my school is great about helping me out, keeping up with the work, leaving during class for the bathroom, etc. my school is small, all girls, so i have become close to so i have become close to some of the teachers...spoken with them about the ic, and how its depressing me so much, but still...i also feel so alone and hopeless. just thought i'd vent
    sara
    sora

  • #2
    Sora--I have had IC since I was 16, now I am 18. I was diagnosed in my junior year of high school, and it was horrible. My friends did not understand, although the teachers were wonderful. After trying many things, and nothing worked, I wanted to end my life. I ended up in the psych unit for a month, and it made me realize many things about myself and how killing yourself is not the answer. I managed to graduate at the top of the class, even though I was on homebound for most of junior/senior year. I lost some friends because of the psych unit/bladder problems, but the ones who stuck by me let me vent and support me very much. As for nothing working, I spent 2 years looking for a urologist who worked with me instead of trying thing and thing with little chance of working. Having IC in high school was very hard for me, and then when I started college this year I was forced to drop out due to medical problems. Things are looking up now, I just had interstim surgery and gallbladder surgery. I would love to talk with you more. My e-mail is [email protected]

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    • #3
      Dear Sora,

      I'm 37 and have had symptoms of IC since my early twenties. I really had no pain until about five years ago. Honey, please don't give up because believe it or not -- research is underway and they have learned quite a bit in the last 10 years about IC. One thing I would offer to you, my urologist at Emory University in Atlanta is one of the best in the country on IC. Dr. Galloway stated that it is IMPERATIVE no IC patient be constipated. Why? Because an inflammed bowel causes and inflammed bladder. Second, I did not know that at 24 when I had my first set of symptoms that it was the beginning stages of IC. I quess I'm lucky that this happened to me a little later in life. I've always been independent so this has been a humbling experience. My only words of comfort are: NEVER consider suicide because it is a permanent fix to a temporary problem. My mother had IC 12 years and one day it just went into remission and she has been pain free ever since. I find ice packs on my abdomen help me when things are really difficult. Now with respect to friends, I want you to understand that it is often difficult for people who are not sick to be around those of us who are. Why? Sometimes I think it makes others face the realization of what could potentially happen to them. I truly believe that you are young enought that a cure and better treatments will be found. I heard one doctor state that what they have learned about IC since 1984 will dwarf in comparison to what they will learn about the illness over the next ten years. Hold on honey, help IS on the way. One thing you can do though, log onto the Interstitial Cystitis Associations web-site at : www.helpica.com (I think this is right) and go to cyberadvocacy. Once their input your zip code and utilize the form letter provided by the ICA and sent to your state representatives. Every letter will help to get additional research dollars for IC. Also, honey ask your friends to do this also on your behalf.
      Good Luck,
      Sherry

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      • #4
        {{{{{{{{{Sara}}}}}}}}}}}

        Sorry to hear you aren't doing well. I agree with Sherry though, they are going to find better ways to treat this illness. I know they are and we just have to hope and pray that it will happen soon. You CAN live a normal life I promise! About a month ago I thought I would never have a pain free day and now I am only having 2-3 days of pain a week. I can deal with that. Don't give up you can get better.
        Love and hugs,
        christina
        Christina

        "Faith precedes the Miracle"

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        • #5
          Hi Sora, could you tell us a little bit more about yourself? What are your most common symptons -- on a good day? on a bad day? You say you have tried everything in the book. Could you tell us what all you've tried so far. I don't think you are old enough to have tried everything in the book (you young thing you) LOL LOL. Maybe if you give us a little more information, someone here will have some ideas for you.

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          • #6
            I was diagnosed with IC when I was 22, but I have had it since I was a small child. I know how you are feeling about being along and all. No one in my school was even willing to accept that I had a medical problem, they only wanted to believe that I was a weirdo. I can only tell you what my mom told me about high school. IT HAS NO EFFECT ON THE REST OF YOUR LIFE. Those that were popular in high school normally have reached thier prime by graduation and the rest is downhill. For everyone else it is an experience you take out once and a while to think about the good old days.....but has no effect on the rest of your life. I was the most hated person in my high school and suffered through many school wide plans to humiliate me. But now I am respected and admired, and I am no longer the person people love to hate. As for the IC, keep trying for a treatment. Remember most of us that have relief find it in a combination of therapies not in one alone. So keep trying new things, and combination of things there is something out there for you. Lisa
            God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging......The LORD Almighty is with us the GOD of Jacob is our fortress." Psalm 46:1-3,7

            May God bless our nation

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            • #7
              hey hun,
              I totally understand where you r coming from. I'm only 14 and im a freshman in high school. Unfortunately i do not have the luxury of goin to a small all girls (girls are so much more understanding)school.Instead i go to a public school of 1435 students. Many times i have felt so trapped i was to scared that people would think i was weird. Its hard cause u just want to fit in and have fun but to me i feel sometimes like its not possible. But anyways bout the meds... everyone i have been put on has done nothin, some even made it worse and i know what you mean bout feelin like givin up i feel like that everyday. good luck hun!
              lyl
              ADRIENNE
              Last edited by ICNDonna; 09-25-2004, 06:12 PM.

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              • #8
                I'm a senior this year and I have been out of school for 2 months and I'm going to try to go back next week. I just feel so down lately, I hate seeing everyone eat all the things that i use to be able to eat and do all the things that I use to be able to do. I'm going back to school on dec 4th for 2 classes and then i'm going to try to work up. I am so nervous about going back. I hate having to keep getting up to go to the bath room. Oh maybe i should mention that i've had ic since 10th grade. School is hard but i have to try. I think i'm so afraid of having an accident in school even though i've never had one the last time i was in school i really thought i was going to have an accident, and i never had the urge so bad that i had to run to the bathroom, so i 'm afraid to go back but i have to go back some time right.
                ~Ginny~
                Your perplexed and confused? My work is done.

                Comment


                • #9
                  someone to relate to

                  hey hon, i am a college freshmen right now and i know how it is great to have someone who's been through it and still remembers. last year was my senior year in high school and i also went for pyschiatric help. rumors spread like wild because of one untrue friend. it's humiliating but you will get through this year even with missing so much school that they threatened to stop exempting my absences and make me take it again, but here i am on a scholarship to one of the best schools for my degree in the northeast. i'm glad you have girls to support you, thats great! in last fall i missed a month getting hydrodistension done and having it not help, but worsen everything... next year will come soon and don't get down on yourself for taking care! pm or instant message me anytime.

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                  • #10
                    ps. did u try physical therapy? with e-stim?

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                    • #11
                      I have had I.C. since 1966, when I was 6 years old. I will be 44 next week.. You have no choice but to adapt and do the best you can.
                      After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!

                      Comment


                      • #12
                        hey girls...Wow, i have just been reading all your messages..I can't imagine how bad it would have been to be in school with IC. All my problems started the year after i graduated (2001), but now have pretty much taken over my life at this moment, i had to quit my job because of severe panic attacks, and i am now having counselling to help me. The IC, and panic attacks and being in constant pain has affected me completely, and i am not myself at all anymore, and i have become distant from my friends.I can't imagine how uncomfy it would be sitting in school feelign like you need to pee all the time, i know how bad it was at work, and for ppl to wonder why i went to the toilet so often. But at school, the kids can be cruel, i used to get teased for many things, being shy, weird hair or the usual things boys seem to take interest in making fun out of you. hang in there girls, I also know how it feels to want to give up..i wish you girls all the best of luck and my blessings, always...luv Tamara, pm me anytime

                        Hi there!
                        I am 31 yrs old
                        Symtoms of IC since age 19 (since UTI)
                        Diagnosed with IC at age 31 (upon 2nd Cystoscopy)

                        Diagnosed with Vulva Vestibulitis & Vaginismus 2005

                        CURRENT TREATMENTS:
                        IC DIET (as of 26/6/13)
                        Elmiron (26/6/13)

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                        • #13
                          In the 70's I would pee between every class, the start and end of lunch, before I got on the bus and right after I got to school. It sucked. Even when I went to college I had to go before every class, usually in the middle of class and right after..
                          After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!

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                          • #14
                            It sucks to be a teen with IC. I should know. IC ruined my Homecoming dance this year. That lil' story is over in the vent section.
                            I know what you're going through

                            Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                            Current IC treatments: menstrual suppression
                            Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                            As-needed treatments for other conditions: Klonopin, Ambien

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