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  • want to hear a good one??????

    Someone told me I should have the bladder taken out so I won't have to have the heparin done anymore. I told them it was a BIG operation. They said "So". Maybe I can rent a room at my Uro's. They told me everything is fixable. If so what about all the people who are diabetics?? Have arthritis ect ect...

  • #2
    Some people can be so stupid
    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
      The thing that gets me is when they were told to have an operation they wouldn't do it and it was nothing near as bad as having the bladder out. I am just so mad, upset and don't know what to do. Just ate a cupcake which I really didn't want. I am really sick of this. I have explained may brains out and I still get this crap. They're not stupid they think they know everything.

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      • #4
        I do know alot of people like this....
        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


        • #5
          I think we all get this cr*p. I get less of it now than I did before, but it still comes up from time to time.

          The main thing is to know that we know the truth & recognize that these people may be very well-meaning & very ignorant at the same time. Or they may be very shallow & not able to empathize at all, in which case they are disappointments as friends.

          This is one of the hardest things about IC is the lack of understanding & the isolation of it....
          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!

          Comment


          • #6
            Sometimes I think my husband is lucky to have hearing loss --- he can turn off his hearing aids if he doesn't want to listen. Bladder removal isn't a small thing and should not be even thought of until all treatment options have been tried and failed.

            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
              Waterflow, I also have people ask me the same thing. But you know what, they don't know my other health issue, they don't know about how serious this surgery is and I come to this conclusion, "I am the one who will have to live with it and when I do make that choice it will be because I chose too, unless the bladder won't hold up no more but again I chose to wait for that. I have to know in my heart what will be best for me and not what others think will be best for me. We know our body better than anyone else. I know people had success with bladder removal but it is not a promise that all is well. Am I making the right decision, I can't be 100% sure, but I feel I need to wait so I am going to do just that.

              Believe me, those who are talking to you would feel the same way you do. They just don't know it because they aren't in the same boat. It is always easy to speak when that person is not having serious health problems.

              I don't think people are trying to be mean but the understanding is not with them.

              Sending hugs, Trishann

              Comment


              • #8
                have you been talking to my sister waterflow
                she don't get it.. I hinted around for her to take jake for whole week before my b-day.. I wanted to spend it relaxing.. fat chance..
                she tells me you're young you can handle it.. never mind my long list of health issues, butsh said she is oldshes 46... hello I'm 41 and huby will be 48.

                sending you big hugs and tryto blow them off, there stupid..
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  People can be so ignorant. My brother is this way. I try and just ignore or avoid people when they start saying stupid things. I think it is hard for people who are perfectly healthy to understand what we go through. Also it depends on the person. My hubby is the most understanding person, and I thank God for him.
                  Jen

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                  • #10
                    Don't you just LOOOOOOOOOVE people like that???!?!

                    If it were THAT easy to just "cure" IC (or ANYTHING for that matter)...don't you think there'd be a LOT fewer people living in pain right now??

                    My mother in law is getting to that point. We went to pick up Connor yesterday and I bent down to play with him "Ouch my knees"!! My FM pain is really kicking up again on top of everything else. Her reply? "You're just falling apart?? What's wrong with you?? I guess you're going to take those pills (ultram) again huh?" It wasn't just her words but her TONE that set me off. I nearly burst into tears right there.

                    I'm really starting to hate her...but that's another story haha.
                    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                    I'd like to be on House, MD as a medical mystery.

                    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                    Connor & Mommy by the tree:


                    Connor with Santa...so happy!


                    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

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                    • #11
                      I think we've all had to deal with ignorant people a time or two with IC. Nobody "gets" it like us!

                      Comment


                      • #12
                        I don't understand families thinking. No one has ever said it was great the heparin helps. Not once. I was happy with that and the tens. I thought finally something helped but that didn't last very long. I don't see how having my bladder out (and I told them what was involved) would be better then having the heparin done??????????? Guess the only thing left for me to do is start saving up the money and then I can leave. I've spent my life helping and doing work that the others were supposed to do. I'm old and not in good shape but at least I should have some time left in peace. I just can not figure them out. They wouldn't go up to a person in a wheelchair and tell them to stand up and walk so why with me? This isn't my home anymore and guess it never was.
                        Last edited by waterflow; 03-19-2007, 02:55 PM. Reason: typo

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