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  • #1

    No Infection

    Well I dropped of a urine sample for them to culture after work on Monday because I was having a lot of pain and some retention that I had never had before. I called today and left a message with the nurse. She called me right back when I was where else, in the bathroom, lol She told me that I didn't have an infection "That's a good thing." Yea, to you it's a good time, to me it means that it's just a flare and I can't do anymore than what I'm already doing. I can't wait until my appt March 30th so hopefully I can schedule my hydro.
    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
    Tags: None
    • #2
      Ugh... isn't it sad that we almost hope for infections??? IC can make things pretty crazy!

      Hope you feel better soon... and I like your "Sick of Peein' " song ... LOL
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.

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        • #3
          Ugh! How frustrating. I hate when I think that I have it figured out "must be an infection to hurt this bad" then, nope, just another flare!!!! Hope you feel better soon!!!

            Comment

            • #4
              sorry you are in pain (((hugs))) It is sad that we hope for an infection, so the pain will stop. I do hope you feel better soon.
              'The will of God will never take you where the Grace of God will not protect you.'

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                • #5
                  Thanks everybody, Hopefully I'll start feeling better soon. At least the nurse took pity on me on Monday and moved my follow up appt from April 10th to March 30th. Thanks for the complement on the song Jen My boss is moving my desk at work and I joke that she should just move me into the bathroom since I'm always in there anyway.
                  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

                    • #6
                      Sorry Christine....I have had a flare now for a few days.. and its driving me crazy
                      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.

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