Announcement

Collapse
No announcement yet.

Hello

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Hello

    Hi, my name is alicia, i am newley diadnosed with IC, and i am trying to learn how to cope with the pain
    Tags: None
  • #2
    to the IC Network Alicia!
    There is a lot of info here to help you with your pain. If you haven't looked at the patient handbook yet then I would really recommend it.
    http://www.ic-network.com/handbook/
    There is a ton of info there including the IC diet which most of us are on. There is also a section of the message boards for pain management which has a lot of great info.
    So sorry to hear that you have IC but you are in the right place to get help and support
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment

    • #3
      welcome:
      Christine has some very good pointers..To find out more info just keep asking questions, every one here is very friendly and tries to answer your questions to ther best of thier knowledge..
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


      ICN 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.

      Comment

      • #4
        diagnosis

        i was diagnosed with ic, pelvic floor spasms, and possible endo all at the same time in nov 06 i have had the bladder distension, i'm on elmiron, baclofen, amitriptilyn, i do bladder instillations every day, im on wellbutron for depression and anxiety, i just went to pain management for the first time last week and the want to do nerve blocks already.

        Comment

        • #5
          Alicia,



          Sounds like you have a lot going on. Please ask lots of questions - we are here to help in any way we can.

          April

          Comment

          • #6


            It sounds like your doctors are on the right track. I hope you experience some relief soon.

            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
              thanks

              thank you it's nice to have people who know what you're going through to talk to, my husband tries but it's hard because he doesn't know what to do or say

              Comment

              • #8
                Yeah, that's the way it is with a lot of friends and family. They almost always mean the best, but it's hard to really talk to someone about something without knowing exactly what that person goes through. I've a friend with a form of muscular dystrophy, and I know I've screwed up trying to be supportive before.

                Comment

                • #9
                  any suggestions, i am having a real bad flare and alot of lower back pain

                  Comment

                  • #10
                    For the lower back pain, I always use my heating pad, that may sound obvious but some people don't think about it. If you have some pain meds I would take those and drink lots of water to keep everything moving through your bladder. Hope you feel better soon
                    Christine



                    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                    I have tried every oral medication as well as rescue instills and DMSO.

                    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                    Also proud mom to the best Bullmastiff on earth, Claus

                    Comment

                    Previous template Next
                    Working...
                    X