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  • Introduction


    I'm new and just wanted to introduce myself. I am 23 and was diagnosed with IC a year ago. I have never had any pain (thank God) only frequency. I did all the oral meds like elavil and elmiron. I struggled with this thru my last year of nursing (graduation is this Friday), I also have a husband and 2 little girls. In the beginning i just wanted to die. I had massive pressure and after talking with an IC advocate I convinced my family doctoe to give me the atarax and elmiron. The elmiron did nothing. i took it for 7 months. I also threw out the elavil after gaining 30 pounds. I still take the atarax and I also have bladder instillations of heparin, marcaine, and bicarb. I started with one a week and now it's been 5 weeks. I am having a little trouble at the moment but it's almost period time and with school I've neglected my treatments. I'm going as soon as I can to get one. I've also been drinking alot of diet coke and eating chocolate which is so stupid. I knew they were my bad foods. Jill has told me over and over not to drink diet coke. IC is so weird. I drink one and when it doesn't cause any problems I keep right on drinking them and then BOOM...I'm in a flare. Hopefully this one will be like all the others. An extra 25mg of atarax a day, lots of bottled water, a good diet and rest and it should go away in a couple days. Sooner if I get that treatment. It's just a long drive to get them. My urologist only comes to my town 1 day a week. I had an appt for Monday but they called and changed it so i may have to do the long drive. I also tried the cysta q, algonot, and aloe vera. The aloe soothed me a little but the rest showed no improvement. I'm thinking of trying the cysta q again. I only took it for a couple of weeks the rest I tried for months. I even tried the alkalizing diet Amrit Willis wrote about. It's called Solving the IC puzzle. Waste of time and money. The atarax helps alot for me and not drinking soda. Sex is usually not a problem. My main triggers are eating chocolate, drinking diet soda, and stress. I used to get so scared. Everytime i had a flare i would call my advocate or e-mail someone in tears. I found it that they always go away eventually. The key is to treat the symptoms as they begin and not let them get out of control. Then once the bladder heals itself, your better. I guess you could say I poured salt on the wound by drinking diet soda after I noticed my symptoms were slowly coming back. Nothing has ever been as bad as that first flare. i always try to ctach them early. I never felt better than I did with the treatments. I could kick myself for neglecting them. I'm gonna get one though asap. Then things will get better. Well I hope to talk to you all soon. i hope we can give each other support, congradulations, and even a shoulder to cry on. I just always have to keep reminding myself that this flare will not last forever.
    God Bless and keep praying for a cure.


  • #2
    Hi kenzy and welcome to the icnetwork. I am in a ittle flare today, had too much tomato sauce this week, 3 nights in row, I should know better. I am glad that you found us. You are not alone. I will pray that you will feel better. congrats on your nursing graduation Another nurse with ic and who will understand it. There are alot of nurses on this site and it is great. I have had ic for years and then went into remisson and then in the summerof 2002, went back to ic after kidney stones and chronic utis. I also have the overactive bladder with it, suffer from depression, underactive throyid, degenrating disc in my back, migrane headaches. Haven't had a headache for awhile. I just had surgery last week to remove adhesions. I had a hysto in 91. I am glad that you found us. Keep posting and coming on here to talk. we are here for you. Congrats agin on your graduation.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie


    • #3
      Hey Kenzy welcome to ICN!!

      We seem to have some things in common...Im 23, Ive had IC for almost 3 years. Diagnosed for 2. CONGRADULATTIONS ON YOUR NURSING GRADUATION....we have that in common too. I am an RN, I graduated last may, and Im currently finishing up my Masters degree. I know that stress can be a huge trigger for me....AND SCHOOL CERTAINLY DOESNT HELP!! The summer after I graduated (last summer) was my best as far as IC....the only flare I had was right before the NCLEX exam...hmm..ya think?!?

      I know that for me, I can sometimes handle a little soda- but DIET?? nooo waaay. THe nutra sweet is what kills me. I stick to sprite and light sodas, they seem to be ok. Also, when Im in a flare, I go to the healthfood store and get almond milk...its very very very keeps my urine pH 7-8. (I have strips to test.) That helps along with what you said- lots of water, an attarax, and rest. Thats my regimen too. What kind of a treatment were you speaking of??

      As far as meds, the attarax every night made me super sleepy and draggy, and I was afraid to try elmiron for fear of hair loss-- Im already thin. I take glucosamine and chondroitin and that seems to be helping. I didnt notice it was until I stopped taking it for a week lmao that was a mistake!! Congrats again on your graduation, and I hope you are feeling better soon...
      Hugs, and welcome to ICN!
      "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


      • #4

        Just my two cents--- the chances of hair loss are so low (I checked the PDR and it said 4%)against the chances of success from the Elmiron. If you continue to have problems, it may be something to reconsider.

        Good Luck!



        • #5

          i took the elmiron for 7 months and had no hair loss, it just didn't help me. You should try it, if you start noticing that your losing your hair you can always stop it and the hair loss will also stop.



          • #6
            Rachel I am on elemrion now for 4 months and had no hair loss. I hope this helps you . Hang in there. there is hope.
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie


            • #7
              I'm 21 and TOTALLY know how stress can trigger!! I know that my major triggers for a flare are oranges... (oranges will be the death of me!!) I've been in love with oranges since the day I was born. My mom said I used to eat them without peeling them if no one was around to peel it for me when I was young!! Gross, huh? hehe lmao I start school this fall. I'm going to be a pastry chef! I can't wait.. And then I'll probably be in a constant flare from the SMELL of fruit and all that sweet stuff I can't eat!! But the good thing about it is that once you've made a 3-tiered cake and had to hang out with 6 pounds of frosting all day long, it's really just not appetizing anymore... hehe blink

              I'm glad that you realize Diet Coke is your downfall. I don't drink soda at all anymore. It kills me if I do. And of course, tomatoes are a thing of the past.. It seems easier to avoid tomatoes than it is to stay away from an orange.. (Mmmm) Hope you're doing better!!

              And CONGRATULATIONS on your graduation!! Nothing better than a HUGE accomplishment to release stress!! ~melanie~ hi
              Life is just a cycle of brilliance and blues. I can't help it if I'm stuck in brilliance.. hehe


              • #8
                Hi Kenzy! Welcome to the ICN!

                I'm glad you're finding a lot of support and information here. Have you had a chance to look through the ICN Patient Handbook? I found it very helpful when I was first diagnosed. I'm 26, and was diagnosed about 5 1/2 years ago.

                I'm sorry to hear that the Elmiron didn't help you. I was on it for 3 years (NO side effects at all), but it took a while (about 4-6 months) to really feel better. I hope you find something that helps you very soon.

                Congratulations on your upcoming graduation!

                Take care,
                My story of healing and hope