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  • #1

    Confused :S

    I'm Kate
    Just turned 16
    Recently diagnosed with IC
    Don't really understand it.
    All I know is it hurts like hell!
    Don't know where to start with dealing with it?
    Can't quite get my head round things at the moment...
    Glad to have found this site
    Giving me something to look at at midnight when the pain has kept me up these past few nights.
    Suffering with exhaustion.
    Anyone for chat? x x x
    Tags: None
  • #2
    Hi Kate and ! I am glad you found this sight also. You can get alot of information about IC. I know it must be hard to be only 16 and have to go though this. Learn as much as you can and find out what works for you.

    Nina
    Meds on now:

    dextro 10mg

    5000mg Vitamin D- when tested, I was sooo low.
    Compound Hormones- Had hysterectomy when 24, ovaries out 37

    At night:


    4mg Zanaflex- Fibro & PFD
    plendil- Raynalds

    I have Fibro, IC, IBS, PFD, Raynauds.

    Tried:

    Past Meds
    Lexpro- changed to Cymbalta for better pain relief –off both
    Ultram – three times a day. Helped , I was tired of always being so tired.
    Elmiron-took for a year-
    Topamax-Did not need anymore since on dextro.
    Atarax- did not need anymore

    Pictures: Hubby & Me, Ozzy, My three Sons!!
    What a proud Mother I am!!



    .

    Comment

    • #3
      HI Kate! I'm glad you found us too. There's a world of info here....probably some that's hard to understand at 16 yrs of age.......but I wish I'd found this site when I started having IC pain at 19 yrs old.
      Diet is a big culprit with IC. Read though the pages on here about what to eat and not to eat.....that will help you a lot. AND ask us questions about anything you've got questions about.
      Hopefully your doctor can give you suggestions also. I wish you luck......and write anytime....on here or PM me, I'm here often. (((HUGS))) Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment

      • #4
        I'm so sorry you have to deal with this disease at such a young age. This sight is full of information--check out the handbook for ideas on how to cope with IC. Diet also makes a difference. You might also check to see if there is a local support group--having people who understand what your are going thru is vey helpful. Take care~angie

        Comment

        • #5
          Hey Kate,

          I was dx with IC when I ws 15, so I know how you must feel.
          I know it seems hard, but try not to freak out too much about your situation. For me at least, stress is a bigger trigger than diet or anything else. I've tried to slow down a bit, start painting again, reading books etc to try and chill out.

          IC is a really weird disease, but there are lots of treatmetns avilable that can help or even put you in remission from symptoms.
          Mine went away for 4 years, then came back in November, but I still have hope that if it happened once it can happen again.

          Feel free to message me if you want

          ~*miz_sunshine87*~
          19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Start of IC symptoms- Summer 2003 (after a UTI)
          Dx- February 2004, after hydrodistension (ouch!)

          Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

          Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

          Comment

          • #6
            I'm glad you found us. I encourage you to read the information in the Patient Handbook --- it will really help you to understand interstitial cystitis. I suggest you begin by reading the diet section so you can begin the diet as soon as possible.

            And feel free to post questions. We aren't doctors and can't give direct medical advice, but are happy to share our own experiences.

            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

            Comment

            • #7
              Hello Kate, I am also new to this whole thing.I guess the more info you get the better you will feel. I am also trying to figure out how to live with this on a daily bais.I believe diet does play a huge factor.I am sure that doesn't sound exciting at your age.Well I wish you the best and let me know of any info you get please .catherine

              Comment

              • #8
                Hi and welcome to the boards! I can't imagine having this at 16. Hopefully, you will find lots of answers to your questions here. Like others have said, we are not doctors so we can't give out medical advise, so hoping your doctor can answer your questions for you. The IC diet is the first thing to start with. (when I was first dx with this at age 32 my doctor didn't know anything about this and when I mentioned it to him about 8 years later- when I found this board, he said hogwash! diet doesn't help sure in the meantime, I was put on different meds. - Since then Luckily he has retired and I have a really good doctor he isn't an expert but he knows quite a bit about IC and I trust him and I'm quite comfortable with him, which is important (he recently sent me to an expert and I didn't feel all that comfortable with him so I went back to my regular Uro and told him so and he said fine).
                Come to the boards day/or night, you'll find someone here all the time. Take care.
                Mary

                Comment

                • #9
                  hello!

                  and a BIG and to you!!

                  I hope you find all the you seek here! I am so glad you found us! I know how hard this all must be for you! But I must say this! I am 23 years old and just recently found about my I.C. although, I have had it for likely my whole life! So, on the plus side, in a way, you are lucky for finding this out quick enough before, perhaps things got much worse you know?! There really is a whoolle worlld of info on this site!! Do all the research you can... start with the elimination of trigger foods first. I know it can be hard. But it really will help in every way!! Also, keep in touch with your doctor's about everything! (It is very helpful to keep your own walking medical journal). You must always be your best advocate for your health and well being! You seem to be heading very well in all the right directions.. and I commend you.. and wish you all the best in the world.. and then some!! Feel free to contact me, or chat anytime... my myspace link can be found on here as well!! warmest regards....
                  Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                  Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                  Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                  Comment

                  • #10
                    Hi Kate,
                    I bet you are dealing with a lot right now! But Welcome dear, and you will get support and kind hearts here! You might heal up better, and I bet at times will feel fairly well; it could happen, just like it happens with many of us! Be sure and follow Dr.s orders, make sure you have a good Dr. and try the diet becauses that has helped many of us. It all takes time, but stay connected and your hardship will have a chance to be lifted by the many good spirits on this board.
                    So many folks and many ages and we all have at least a tiny something in common with this illness.
                    Take care and remember, you have sisters here to support you in the good and the bad.

                    Love,
                    katheryn

                    Comment

                    • #11
                      Hi Kate and ! I was SO overwhelmed when IC was first brought up as a possiblity for me! I felt like I was getting too much info at first! But I was able to sort it out and start working on getting better. Please know that there are wonderful people here who really do care! If you have questions about treatments, diet, etc, chances are someone here will be able to help you out!
                      Glad you found the ICN and hope you get some relief soon!
                      Rachel
                      DX's:
                      IC; PFD; possible Fibromyalgia; IBS;

                      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                      I've Tried:
                      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                      Currently using:
                      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                      Comment

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