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  • #1

    New to ICN network....



    I've been diagnosed with IC about 4 years ago but I finally found a doctor who is putting me through a treatment program different from any other doctor's I have tried. I was wondering if anyone has had success with some of the things that I am trying:

    Bladder Instillations (twice a week)
    Physical Therapy (Once a week)
    Elmiron (3 times a day)
    Hydroxyzine (2 times at night)


    I have not gotten the bladder instillations yet and I am wondering if they have worked for anyone and if they are painful, I am a little nervous about them.

    I am up for any suggestions and information about IC, I have had this for a long time and I am just really frustrated and tired of not having any relief.

    Thanks!!!
    Dorothy
    Tags: None
  • #2
    Hello and

    I have heard alot of people having success with the treatment plan he has set out for you.. Good Luck!!

    Ronda
    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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    • #3

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      • #4
        Dorothy and to the ICN...

        There are lots of people on the Boards who use a combination of all of these treatments. I hope that they work for you and you find relief from this blasted disease. (((hugs)))
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



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

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        IC 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

        • #5
          Hi Dorothy,

          I have been doing weekly instils since April (3 the first week though). I would say the fist one was uncomfortable (cath.), but they aren't bad. I don't know if I've benefited from them. Atarax (hydroxine) has helped me tremendously sleep through the night. I was getting up every 10-30 minutes to urinate and now I can go 7 hours most nights before having to urinate. Major improvement. It doesn't help me during the day, but getting better sleep is a miracle!

          I don't do PT, but I am on Elmiron. I will be coming up on month 3 soon. I would suggest taking it out of the capsule and drink with water to avoid GI upset (the capsule gave me gas/cramping). Some people have the same reaction. The med irritates my stomach a bit, but not horrible.

          Good luck!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

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          • #6
            You want to check out the ICN Patient Handbook: http://www.ic-network.com/handbook/index.html



            Well Wishes
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment

            • #7
              Hi Dorothy,
              Sounds like a pretty good plan! Lots of patients have had success with the Hydroxyzine & Elmiron.

              Elavil is a pretty standard oral medication often used with the Elmiron & Hydroxyzine (don't know if you've tried that one already or if you'll even need it with the other things you're doing).

              I have had success with bladder instillations (have done both the DMSO cocktail & home heparin types of instillations) & physical therapy (in-office and home exercise program).

              Do check out the Patient Handbook Kara mentioned-- it's full of helpful information

              Wishing you much success & that you are feeling better soon!
              Kadi

              -------------------------------------------------------------
              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.
              ------------------------------------------------------


              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest
              "

              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!

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              • #8
                Hi Dorothy,

                That is great your doctor is working with you. Hope those treatments will be successful for you.

                Take care, Trishann

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