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18 with ic

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  • 18 with ic

    i'm 18 and i have ic and i was diagnosed with it this year as a senior in high school. its very hard for me to cope with because i know no one my age that has this. i feel all alone sometimes. but reading everyones posts really helps me. i just feel so frustrated dealing with this. i am on the ic diet and i feel like it barely helps. if anyone has any advice that would be great. =)
    “What does not kill me makes me stronger.”

  • #2
    Hi there,

    I know how hard it can be to be a high school student with IC. I was 16 when my IC got bad. That was almost 10 years ago and no one would dx me with IC because I guess they didn't think it occurred in people my age! So I didn't get the dx until I was 20. I remember being in pain and leaving school early to go home and rest and I remember frequenting the bathroom! The IC diet is a great place to start for sure. If you ever want to chat, just drop me a line via PM. I know you feel alone with IC in your everyday life but just know that you can always come here and vent or ask questions or whatever! You're definitely not alone.

    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      Hi Lizzie,

      My heart goes out to you. Have you done an elimination diet? Where you basically stop eating all foods except safe foods. Then you slowly introduce other foods so you can find the foods that trigger your IC. This prodcess helped me greatly! What meds are you taking? If you just started meds, please be patient because some take quite a while to work.

      I'm not an IC epxert, just someone that had a miserable time with IC and now feels blessed that I have a producive life again. If I can be a shoulder to cry on or ear to listen - please don't hesitate to contact me. I'm also on myspace.

      Hope you get some relief soon!

      My issues:
      Adenomyosis -Diagnosed 2010
      Fibromyalgia - Diagnosed 2009
      IBS - Diagnosed 2007
      IC - Diagnosed 2003
      Endo - Diagnosed 1998
      Cystic Acne

      My meds:
      Elmiron orally 100 mg 2x per day
      Effexor 75mg 1x perday
      Welburtin 150 mg 1x per day
      Maxalt (as needed for migraines)
      birth control pills


      • #4
        Thank you so much for all your advice!! i really appreciate it! I do have a list of food i should and shouldnt eat, but i dont know exactly how strict to be with it. I also have prelief. i never eat the food on the bad list however. the only medication i am taking is urelle.
        Thanks again so much! <3
        “What does not kill me makes me stronger.”


        • #5
          I have had IC since I was 14. I am almost 18 know. I had a awful school and i had to quit. They said IC wasnt a reason to miss school. PM me if you ever wanna talk


          • #6
            Hi ! Its tough to go through this at any age , but Im so sorry that you started so young ( that goes for Jessie too !!) . I started at 21 but mine wasnt bad and it went into remission until I was 24 /25 . Has your doctor talked to you about any other medications ? If you dont mind me asking , what are your symptoms ? I know Im 10 yrs older then you , but Im a good listener , if you ever want to talk about anything please feel free to pm me . I hope you feel better !!!




            • #7
              I am 17 years old with IC. I also had to quit school becuase of "poor attendance." I would always been down at the nurses station and they never believed me. I am consider going back this year to finish up because I now have a diagnosis and no one can doubt me now.

              STAY STRONG!
              My main health issues: Diagnosed IC, Diagnosed Generalized Anxiety/Panic Disorder, O/RH- blood-type. I truly believe that I have an auto immune disease.
              I have had chronic UTI's and kidney infections since the age of 3, and was hospitalized at age 9 with a severe kidney infection. I have had many Voiding Cystourethograms as a child. Constantly sick as a child. No History of abuse.
              First Symptom of IC:Age 17 11/17/2007 - Felt like onset of UTI. Went to many doctors and ER's before referral to a urologist in 05/08.
              Diagnosed: July 22, 2008 after a cystoscopy with hydro distention. I was in remission for 3 1/2 years (08/08-01/12) after distention. Complete remission during pregnancy (10/09-06/10). On and off flares 01/12-03/15. 2nd Hydrodestention 03/15.
              Currently battling flares since 07/16. My main symptom is urethral burning.

              Medications I have tried:Too many antibiotics to count, Elmiron, Tens Unit (scared it was going to mess with my heart rhythm) Vesicare
              Current Medications:
              Cystoprotek - 4 per day Desert Harvest Aloe Vera - 4 per day Rainbow Light Prenatal Vitamin - 1 at night
              Zoloft - 50 mg for Generalized Anxiety Disorder - AM Renew Life Probiotic - 30Mil Uribel - 1x per day PM
              ***Currently trying to maintain a clean eating diet. It seems to be helping.***
              TTC #2 since 11/2015, 5.5 years after #1. One miscarriage at 5 weeks.


              • #8
                I was 18 when i started ic symptoms.... I'm 22 now and starting to have a normal life again thanks to meds and dr's. wishing u the best of luck!

                Dance like no one is watching
                Love like you've never been hurt
                Live today like it's your last

                Dxd with IC in June '06


                • #9
                  My daughter is 17 with IC

                  My daughter is a senior this year and has IC, as well is myself. She missed so many day's last year she was homebound with a teacher coming out to the house 3 times a week. This is her senior year and she is wanting to attend school. She has a hard time with back aches from the hard chairs. Do you? I also had her urologist write a letter to excuse her for bathroom breaks but she also doesn't want to call attention to herself or be treated special, do you feel like that also? She has loratab to take for pain but that makes her sick to her stomach and she is still in pain, sitting in a warm bath helps her alot. Have you tried the warming pads you can apply to your stomach? I hope your school year goes well for you. Take care
                  Last edited by ljarman; 08-14-2008, 12:13 PM.


                  • #10
                    High school

                    My daughter is going to be a junior in high school this year. Just diagnosed with IC in March. Last semester she was too embarrassed to leave class to go the bathroom, so she sits through class in pain. This summer has been a nice break for her since she can stay home, but classes start up again in a few weeks and she is worried whether she will be able to sit through class or not.

                    She takes Elmiron 3 X day but that has not helped at all yet. Has only been on it for 3 months though. No bad side effects though, so she will continue. She takes Elavil at night and thankfully that helps her sleep really well. She just can't get any relief during the day, goes to the bathroom every 15-20 minutes like clockwork. We are considering bladder instilliations, but she is very nervous about a catheter, and I don't want to do anything that will cause her more pain. Have any teenagers had instillations and had any success with them? she is pretty strict with diet, but that doesn't seem to help either.


                    • #11
                      I'm sorry to hear your daughter is going through the same. My daughter has started instills in the Dr. office she started 3 times a week for 6 weeks then she visits when she needs one. She also was scared to cath but the nurse has ic that was doing the instill so she knew how to talk her through it. We were grateful for that. I currently do instills at home on myself. The lidocaine helps me. My daughter didn't have any luck with Elmiron, hopefully yours will. But to answer your question the instills did help some. She currently watches what she eats and takes prelief to remove any acid from her food or drink it's over the counter, then 1 antibiodic a day, urelle 1 tab 4 times a day when she is in a flare and loritab for pain when its real bad. I don't know if heat helps your daughter but we get the heat pads you can stick on under your clothes and it helps some. Please let me know how she is doing. Best Wishes


                      • #12
                        Thank you for your reply.

                        What type of instills does your daugther get, Elmiron or Heparin? How long does the relief last after an instill? Also, how long did she try the oral Elmiron for?

                        Does your daughter think she will be able to attend school more comfortably this year with her current treatments? I hope so...


                        • #13
                          Good Morning,
                          My daughter receives a lidocaine instill mixture, we have tried a few but this works good for her. She was on Elmiron for 6 months . She started school last week and has had alot of back pain but is trying to work through it. We are having a problem with her pain medicene when she takes it she feels sick to her stomach and it still doesn't take away her pain so we have an appoitment to see if we can change it or what we can do about it.


                          • #14
                            Sorry to hear she is still having the back pain. Hope she can get that under control and be comfortable enough to get through the school day. That seems to be the biggest challenge for kids with this condition. Best wishes for a susscessful senior year. Keep us posted on her progress.

                            My daughter has an appt with her uro on Wed, so we will discuss the instills. She seems to be a little better the past 2 weeks though, not complaining about pain so much. So, we may hold off for now and see if things continue to improve on their own. But, the real test will come when she has to sit through class in a couple weeks. If she can't do that, I think we will have to try the instills.

                            Thank you for all the info. It definitely helps to hear from soemone with a daughter around the same age going through the same thing. There's a lot of info on these boards, but very little of it is specific to teenagers and the challenges they face with getting through the school day.


                            • #15
                              Sitting on chairs, especially hard ones is a major problem for me as well. It aggravates my bladder and lower back...I am always fidgeting in chairs all day long, however, I am age 37 and not in school anymore.