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  • First Hydro Scheduled!

    Well Everybody,
    I went to see my uro today because the Macrobid that he had me on was not helping one bit and I still felt just as horrible. He had told me if it didn't work he would do a hydro/cysto and biopsy. I wasn't supposed to go back until April 10th but when I told the nurse how bad I was feeling she moved my appt up. He wants me to do the hydro, which I was expecting and he had no problem with me coming back early. I can't believe how quickly I got my surgery scheduled though. I went to the scheduler and told her I would like to do it ASAP because I'm so miserable and she got me in for Wednesday April 4th! That's less than a week away. So I had to go and get blood work done right after the appt but that was no problem because it was right next door.
    I am really happy to be getting it done to prove that I have IC and hopefully get a better treatment started but I am also really really nervous. On a good note though my uro does not seem to have a problem giving pain meds as many have you have said. I told him I didn't have anything for pain and hurt so much of the time and gave me an rx for vicoden right there on the spot. Thank goodness as I was out of the ones my gyn gave me. :woohoo:
    Wish me luck on Wednesday
    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

  • #2
    Christine,

    I am so glad that your Dr. moved up your Cysto/hydro! I hope that you are one of the lucky ones that goes into remission after having one.

    I am also happy that your Dr. is treating you compassionately, and proving that he is taking your pain seriously by prescribing you pain meds. :woohoo: That is AWESOME news! I hope that they give you alot of relief and help you to be able to start doing some things you enjoy again, that you havent been doing b/c you have been feeling so poorly.

    Please let us know how the Cysto/hydro turns out. We will all be rooting for you!

    Just one idea.....when my Dr. did mine, he also did a rescue instill afterwards, before I woke up. That way, I wouldnt be in as much pain afterwards. I cant remember if you have ever tried them or had any luck with them, but if they help you too (or you havent tried them), it might be worth trying one for this.

    Good luck! And dont forget to post the update (or have your husband do it, if you are resting), since we will all be worried!

    Many hugs,
    Amy

    Comment


    • #3
      Christine,

      I hope you cysto/hydro goes well for you.. I would ask him though if he could keep you in the hospital overnight with a catheter just to be on the safe side..I think it was Donna saying that she stays overnight and they still consider it out patient...

      Also ask for a script of pain meds about 2 days before you go in for surgery and have them filled, That way you want be having to get them after the sugery... Just a few tips thought maybe it would help...Please keep us posted on when its going to be...
      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
        Hi Christine.
        I am confused. Was he giving you the macrobid for an infection or to treat the IC?
        In any event, I hope all goes well with the hydro and that it gives you some relief. Big Hugs to you.
        Jen

        Comment


        • #5
          Thanks everyone for the well wishes. I'm nervous as all get out but I really trust this dr so I think all will be fine. Jen, long story but my gyn did the PST and said I had IC, basically put me on Elmiron and that was it, which so far hasn't helped at all. So I made an appt with a uro, I have a PPO and don't need referalls. He said that he wanted to rule out everything else and make sure it was IC. He said that people that don't have IC can respond to PST and people who do have IC might not respond to it. He did an in office cystoscopy to see if I had anything wrong that was visible. He said that he did see chronic inflammation but he wanted to make sure it wasn't bacterial in nature. He took a urine sample directly from my bladder when he did the cystscopy and sent it for a culture to see if I had an infection and that was the cause of my problems. He told me to take the Macrobid for 10 days twice a day and then for 4 weeks once a day to see if that helped my symptoms. I didn't make it that long because I was so miserable and nothing was getting better, so I had them move up my appt which was today and that's when he said we should do the hydro.
          Wow that was a mouthful.
          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
            GOOD luck and tell us how it goes...I'm still on the fence about having it done (fear of pain/retention is worse than anything else...)

            Take care!
            Tracy
            (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!

            Comment


            • #7
              Good luck on Wednesday, Christine. I will be thinking of you.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                I hope the procedure gives you some answers and some great rreleif.

                Erika
                IC diagnosed officially via cysto/urodynamics 1/26/07

                Grade II Endometriosis diagnosed via lap 12/11/07

                "Fall down seven times, Stand up eight."

                "Life is a tragedy for those who feel and a comedy for those who think."

                Current Treatments:
                Interstim Since 5/25/07!
                Birth Control

                Comment


                • #9
                  new also to ic and first hydro

                  hello all..this is my first time on this website. I have had recurrent UTI infections for the past 12 years. I am 29 years old. Yeah to the point that every time i got one I could say 'lets see how about cipro this week..or levaquin or macrobid..which one this month." After my first urologist just gave me Macrobid to take after sex all the time..I finally went to find another doctor and another opinion. My obgyn office had a bladder health lady who asked me if I had ever gotten diagnosed before with IC. I told her no and so she did the potatssium dye on me and did a few rescue therapy treatments on me unitl my urethra was just on fire from the treatments..she told me my urethra was very small and was hard to get anything but an 8 gauge inside me. I finally went and saw my 2nd urologist and had the hydro done this past monday. They told me I could hold up to 800ml of urine in my bladder and for an IC patient she thought that was odd. She did dialate my urethra and told me I would have to come back in about 6months to a year and get it re-dialated. They took all the pictures in the cystocopy and only found just a few small bloody spots. She told me that if I did have IC than it was a small gray area. I am just so unsure if I should get a second opinion or not. I am a flight attendant and you all know how we have to hold our urine at times.

                  Comment


                  • #10
                    I'll be thinking of you.

                    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


                    • #11
                      Christine- Will be thinking of you. Let us know how it goes.

                      Comment


                      • #12
                        Wow... your hydro is coming up this Wednesday!!! Good luck with it; I'm sure you'll do fine. It will be nice to know if it's IC or not for sure -- I know that when I found out after my c/h, I was totally relieved to know there was a reason for the two P's (pain and peeing).
                        ****
                        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.

                        Comment

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