Announcement

Collapse
No announcement yet.

hydro on monday.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • hydro on monday.

    getting nervous here, monday is my hydro date, we are to be there at 745! yuck! scheduled at noon.
    mom to 3 wonderful kids


    IC symptoms 7/03,
    hysterectomy 11/04,
    prolapse cervix 7/07
    diagnosed: IC 2007
    IBS 2008

  • #2
    Good luck!! Everything will go just fine...
    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


    • #3
      I'll be thinking of you. I had one nine days ago and mine went fine.

      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


      • #4
        Good luck! It's not fun but it wasn't as bad as I was worried it would be, I had mine at the start of April.
        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


        • #5
          charmed, you'll be fine...i'll be thinking of you
          (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


          • #6
            Hi Charmed,

            Good luck with the hydro - it is NOT as bad as some people make it out to be.....sending hugs your way!

            Beth
            IC diagnosis 1999
            Meds: Elmiron
            hydroxyzine hcl
            DMSO as needed
            valium as needed
            librax 3x day

            TENS therapy



            Thanks to all on the boards - YOU have helped more than I can say!



            A person's true wealth is the good he or she does in the world.

            Comment


            • #7
              HI Charmed.......I'll be thinking of you too.....and it's not as bad as some say....let us know how it goes......Roxie

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

              Comment


              • #8
                Just sending ((((((((hugs))))))))))) your way.

                Hugs, Trishann

                Comment


                • #9
                  Good luck sweetie and please keep us posted. I'll be thinking of you!!
                  The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                  First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                  Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                  Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                  Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                  BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                  Comment


                  • #10
                    wish u well... i had a hydro last thursday everything went good.
                    Angela aka sleepyangel30

                    Comment


                    • #11
                      My bladder has not been happy with me today! it must know something is up! We have the kids farmed out tonight. We are just getting the house all organized and cleaned. I will be off on until wed. I am very nervous! my stomach has also been bothering me for the last few days! i will let you all know how it goes! wish me luck!
                      mom to 3 wonderful kids


                      IC symptoms 7/03,
                      hysterectomy 11/04,
                      prolapse cervix 7/07
                      diagnosed: IC 2007
                      IBS 2008

                      Comment


                      • #12
                        I'm sending encouraging hugs and well wishes.

                        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


                        • #13
                          I did it!

                          Ok I did almost chicken out. We got there at 720 for my 745 appt. Then waited outside in the sun from 9-1020. at 1030 we were in the surgery waiting room. then waited. We both fell asleep! I had a nice wrinkle on my face from my husbands arm! REAL ATTACTIVE!!
                          Anyway upstairs they tried to start a IV--my veins just weren't going for it! So they took me into the or. I told them I was running for the door both in a serious and joking!
                          So my uro told me afterwards that my bladder looked good. I had some pin point bleeding in a few spots. They took 2 biopsys and she said they had to burn some things off the base of my bladder. ouch! She describe that kind of like when you cry really bad and skin gets red/blotchy. That was all I really remembered. She also had a chat with my husband. she told him that my bladder looked really good and my cervix didn't look like to was too dropped. So he says to me that we can rule out the bladder as the source of my pain!!
                          Thank god he is a good man! When I told him what was said to me he changed his way of thinking.
                          When I woke up from the procedure had had the same pain,in same places, just more intense.
                          My experience at UC San Francisco was very good. I had some great drs there yesterday.
                          I was so sick afterwards though! The ride home was just awful!! I threw up in the car! Thank god I brought towels!!
                          Then we swing by the pharmacy to get my pain meds and cipro. My uro called in the vicodin (i asked for stronger) and the post op faxed over the cipro. we get there to pick it up and the cipro was never received!
                          so I track down a on call uro for ucsf and he called in a rx for me. So of course my husband went in to pharmacy and i waited in car but then decide i better go in. Did I mention this is also where I work?? I looked like hell! While I was waiting I was talking to some coworker and they learned a bit about IC. I was told I hide my pain well they never knew.
                          well i am going back to bed thanks for being there with your support and letting me ramble.
                          mom to 3 wonderful kids


                          IC symptoms 7/03,
                          hysterectomy 11/04,
                          prolapse cervix 7/07
                          diagnosed: IC 2007
                          IBS 2008

                          Comment


                          • #14
                            So glad everything turned out ok.....
                            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


                            • #15
                              Hi Charmed! I was thinking of you all day yesterday! I'm sorry you had to wait so long. I almost chickened out of my endoscopy too. I remember the nurse calling me back and saying "okay are you ready?" and I said "no not really" and I thought okay now's my chance to run! So I'm confused -they said your bladder is not causing your pain but what were the things they burned off? And what is the plan now? I guess maybe you won't know until your follow up. Sorry you got sick in the car. I hate throwing up. Was it from the anesthesia or the pain?? Hang in there sweetie!
                              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                              Comment

                              Working...
                              X