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  • Going to School With IC

    Hello, I'm Daphne and 16,
    I'm not fully diagnosed with IC, but show most of the symptoms and my doctor is fairly sure it's what I have.

    We're on summer break at the moment, but come August 31st I'll be back in high school again as a senior and going with IC makes me very nervous.

    I drink a ridiculous amount during the day, and also need to go to the bathroom quite often. When I have an episode of IC I need to drink even more, and pee once every ten minutes, at the least.

    How would you deal with this in school? Even if I'm not securely diagnosed with IC by school's start I'll be asking my doctor for a note which says that I have a medical condition which requires me to bring water, and that I need to be able to use the bathroom whenever I need to. However, I'm not sure how accepting my school will be to this, or my teachers.

    Also, missing school because of IC is a problem. If we have 15 or more absences we cannot go to prom, period. Even if we have doctor notes for every single absence our attendence to prom is not allowed. I was absent exactly 15 days last year, and at least half of those are due to IC and they've only gotten worse through the summer.

    How do you deal with IC in school?

  • #2
    Hi and welcome,

    I was around your age when I was diagnosed and remember how hard it was.
    You are on the right track with getting the note from your Dr. I honestly don't know that they can say much with that note due to the Americans with Disabilities Act.

    I also don't think they could deny you going to prom if it were legitimate absences, again because of the reason mentioned above.

    That said do your best to make it to school when you can. One thing that can help is your diet. I know that is hard in high school but it could make a big difference for you. In my signature line you will see a link to the Handbook, there you will find the IC diet. For many of us, diet is a major part of our treatment.

    You might try to cut back a little on the water during the day and make sure you are drinking good PH level water. See some of the threads on here about water discussions.

    Let all your teachers know that you may have to leave to go to the bathroom and explain or have your school nurse talk to them about this.

    You can do this and remember to enjoy high school. You do it one time and your senior year is so special!
    Jolene

    "Life is what happens when you are making other plans" John Lennon

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    "IC Angel 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
      Hi Daphne,
      I am a high school teacher and also have IC. I face a lot of the same issues you would except that I can't write myself a pass to go to the bathroom!

      Your teachers will have to let you use the restroom if you provide them with a note from your parent and/or doctor stating you have a medical need to use the restroom more frequently than the scheduled passing periods. When I have students with medical restroom concerns, I will call to verify the validity of the parent note and will conference with the student privately that I will publicly state "you owe 15 minutes after school" the same as the other students*, but he/she does not have to actually serve it. It just keeps them from not looking different from the other kids. The kids have all said that is fine with them.

      *The school I teach in is very rough & during class, on bathroom passes, students have vandalized the bathrooms in unbelievably disgusting ways, been caught having sex, using/dealing drugs, setting fires, etc. So most teachers have a 15 min afterschool "makeup time" for restroom use. No, it's not fair, but it's unfortunately necessary.

      Your doctor can also provide you with a letter that you may need to miss more than the number of days allotted for "regular" absences. I think the issue with prom could be quickly appealed by your parent through a principal or the vice principal in charge of prom.

      I hate to mention your parent so much as you are a young adult & nearly done with high school, but the sad reality is that your parent or guardian will more likely get you the appropriate answer from the school faster than you handling it on your own will. Some of this is just plain bias toward young people and some of it is a large number of students requesting special considerations for vague and often questionable reasons.

      Your concerns are valid & if you provide medical documentation, they should be handled appropriately for you. Good luck! And if you need anything, please feel free to post again or send me a private message And have a happy senior year! Hopefully your IC will get better with treatment & you will be able to enjoy lots of the special things that come with your senior year!
      Kadi

      -------------------------------------------------------------
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

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      • #4
        Dear Daphne,

        I wanted to say Hi and am sorry that you might have IC. You are so young and shouldn't have to be dealing with this so early in your life.

        You didn't say whether you were being referred to a urologist or not for treatment. I am assuming that that is coming up. In the meantime, you might want to ask your doctor to start you on some of the usual IC medications, start working on your diet, and drink only spring water with nothing added to it. You can get information on IC meds and the diet through this site. Doing the diet and using the spring water helps a lot of ICers quite a lot, and you don't need a prescription for those things. Make sure to keep yourself well hydrated. Concentrated urine causes you more symptoms than diluted urine. Hopefully, you will get enough relief from those three things that H.S. will be less problematic until you see the doctor and/or urologist and also get started on some meds, if the diet and spring water don't help you enough.

        Hope this information is helpful to you.

        NancyB
        Last edited by NancyB; 07-23-2009, 03:00 PM.

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        • #5
          Daphne,

          I was not yet diagnosed when I was your age (10 years ago) but looking back I am certain that I was battling IC throughout all of high school. I felt like I had to live at the bathroom at times!

          Anyway, you might already be aware of some of these practical tips that I had/have for getting through the day.

          1. plan ahead for bathroom breaks. I used to try to carry 2-3 classes worth of textbooks at a time. Yes, sometimes I looked like the dork with a pile of books, other times I just carried the bookbag all day... BUT it enabled me to run the bathroom instead of my locker in between classes. Going in between each class usually stopped me from having to ask the teachers more than necessary. Carrying the bookbag also gave me the "woman's" excuse if I needed it. That generally got me sympathy from the female teachers and discomfort from the men... no questions asked. -note, another benefit to carrying your bookbag with you is that you can carry more of the IC pills around with you. Knowing school policies about drugs, now though, you MUST make sure to get this approved by the school.

          2. If comfortable, joke about your "pea-sized" bladder. I used to "blame" it on all the water I drank... Like you, I chugged water bottles in high school. Joking about the bathroom breaks and blaming them on the water bottles deflected unnecessary attention.

          3. I don't know if you're carrying water around with you all day or not. I drank a ton in high school, but I started to limit WHEN I drank it. I would chug two water bottles at lunch but refrain until then. That way, the majority of my restroom trips would be towards the end of school/when school was out. Chugging the two bottles then DAILY also kept my urine fairly diluted which helped with the pain. Of course, at the time I didn't necessarily know that was what was going on... ahhh hindsight!

          4. Wear comfy pants like yoga pants to school. For IC, the best part of high school and college is what you can get away with wearing to class! Wear the comfiest pants possible. Alleviating the pressure on your pelvis can stop many a flare from starting.

          5. This tip may sound like your mom, but it is true... try to avoid unnecessary stress. I flared TERRIBLY around finals/big paper time. Try to organize yourself and plan out your study times so that you minimize stress as much as possible. I used to literally plan out how many hours I would research, which days my first drafts would be done etc.

          Good luck,
          ellen

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          • #6
            Hii Daphne,

            I'm 16 as well, and I start my Junior year on September 8th. If you get a doctors note saying you need to be able to use the bathroom during school, your teachers must let you. Make sure you give that note to your nurse so that they know. I was diagnosed during the school year last year and my teachers were so helpful. Some class periods when I was flareing I would go to the bathroom 4 times in a 45 minute class and they wouldn't second guess to let me go. It will be hard, but just make sure you stay strict to your IC diet and take your medicine. Also, ask your doctor to get a note if you need so that you can get out of gym if your flaring. We all know how it is when your bladder feels like it's going to fall out of you it hurts so bad, but your teachers don't and they need to see it on a piece of paper to understand.

            If I can be of any more help, please let me know. Message me or something, lol (:

            Good luck with your senior year
            Gina Marie.
            Diagnosed;
            IC; Early November 2008, age 15 by hydro/cysto
            IBS; May 2010

            Current Treatments;
            Elmiron - 2 pills twice a day, started on 8/11/09.
            Cystoprotek - when I remember, not usual.


            she's seventeen and a beauty queen <3

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            • #7
              You will need the support of your parents on this. I suggest you have your parents get in touch with the principal at your school (outside of school hours so no embarrassment for you) to make sure you are able to have restroom access when needed --- and I definitely question the right of your school to restrict prom attendance for any student who has been ill. That would mean that if a student had appendicitis or an accident that caused absences, they would be punished! Not okay!

              Please --- get your parents involved to protect your rights --- two of my children (now adults) have allergies so I know how important it is to have parents helping.

              Sending gentle hugs,
              Donna
              Stay safe


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              • #8
                In case anymore teens read this thread, I'm 19, diagnosed in March 2011.
                I've been having symptoms since grade 9 (age 14) and they got really bad, really quickly.
                I was still trying to get a doctor to listen to me and send me to a urologist at that time. So without a diagnosis or even recognition of my symptoms, I had a horrible experience.
                Most of the teachers thought I was just crazy, doing drugs, or going outside to smoke. I also was drinking a whole bunch of coffee because I have a sleep disorder that makes it hard to get any restful sleep (atypical non-REM parasomnia), so I would blame it on the coffee, even when I reduced my coffee intake drastically. At first, I would ask to go once in a 75 minute class, but it was painful and I couldn't concentrate.
                By January, I had finally gotten an appointment for a uro later in the month. But by early Jan, my teachers had gotten fed up (asking twice or more in class to go).
                My math teacher humiliated me in front of the whole class, saying that I was too young to have bladder problems, and NO I couldn't go to the bathroom, as I was probably doing drugs in there. Needless to say, I packed up my things crying, and left her class for a solid two weeks. My mom called in and asked for a principal-teacher-student-parent conference, because she got a call saying I was about to be suspended. We got it sorted out with a note from my primary doc. I saw the urologist, he gave me OAB meds, and things got a little better (only going once or twice during each class.)

                The key is to not let yourself or your child go through that - you have to advocate for yourself or your child before they ever step into a classroom. That way, the teachers will have to help you be in as little discomfort as possible, whether it's taking bathroom breaks, or using a heating pad, etc.

                As for dealing with friends, I'm not going to lie - it's going to be difficult. If you're relatively under control with meds and whatever else, it won't seem too strange to them. Like someone else said - joke about having a teeny tiny bladder. If it's uncontrolled like I was, you may want to consider taking a semester with virtual/online school, or homeschool. You can always return to school when you're ready, and making friends will be easier! You'll also be able to get better grades if you aren't constantly uncomfortable and anxious.
                Good luck to everyone out there. <3 Sorry for the wall of text.
                21 years old
                dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                ♥ looking for a way or medication to help stop spasms ♥

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