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  • Rescue instilations?

    I've heard some of the ladies talk about rescue instilations and I'm just wondering what you mean by that. I've tried just about everything. As a matter a fact my uro has told me there is nothing else she can do. I have the interstim, i've done DMSO, Clorpactin, all of the oral meds. IC is just really devastating me mind body and soul.
    "Pain is a more terrible lord of mankind than even death itself!" - Albert Schweitzer

  • #2
    Many drs tell you there is nothing left to try.
    I have been told that many times.
    Keep fighting for yourself and keep searching for answers!!!
    As far as rescue instills many people do these for relief.
    I wish you the best!
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
    One day at a time

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    • #3
      I am receiving rescue instills. My doc is mixing Marcaine, heparine, sodium bicarbonate, steroids, and gentamicin. The solution is then put in my bladder and I have to keep it for 20 minutes. I have just been diagnosed with moderate IC and I will continue to receive these instills for the next 6 weeks.
      Many people here are using these instills (or other mixture, depending on their doc preference) and are instillating them at home, several time a week if necessary.
      I have to say that I won't be functional at all w/o them...

      Hope this will help

      Best,

      Myriam

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      • #4
        When first diagnosed my GYN did 9 rescue instills of an Elmiron cocktail. It consisted of 2 Elmiron capsules,opened and the powder mixed with DSMO,heparin and Lidocaine. There are different formulas that Dr.s use but the mixture was put into my bladder via catheter and I was free to leave the office but I had to hold it in for an hour and then void it out.I had 2 treatments the first week then once a week for 7 weeks. By the time I had the 9th treatment I was pretty pain free and still am as long as I watch what goes in my mouth. I stick to the IC diet and my biggest problems have been "hidden ingredients" in foods and dyes in medications.

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        • #5
          Here is a link about rescue instills that might help you..

          http://www.ic-network.com/treatments/
          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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          • #6
            Thanks for all your responses. That is what I thought everyone was talking about. I did do them 3 times a week about ten years ago. At that time Elmiron was not yet approved for use in the US yet. So I didn't know that it was being used in the instills. In May I had a hydro/cysto with clorpactin. the Dr. did put Lidocane in my bladder at that time and I was amazed at how little pain I had for about 3 days and then it wore off and I was in HORRID pain for about 2 weeks. After over 20 years with this 'beast' I'm just exhausted, depressed, & so fed up with those who do not understand.
            "Pain is a more terrible lord of mankind than even death itself!" - Albert Schweitzer

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            • #7
              This is a horrid disease and I'm sick of it too and I have only been diagnosed since end of May of this year.

              Comment


              • #8
                I feel your pain. I've had this horrible disease for 10 years. I've lost my marriage, friends. I want to hit people that say, well you look fine. But I have to remember that they have no idea what it's like to always have a fire burning in the middle of your body. It does help a lot to talk to other people on this site, because I know they know how I feel. God how I hope someone will find a cure and soon.
                God bless us all......
                Karen

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