Announcement

Collapse
No announcement yet.

I do have IC

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

  • #16
    OMG!! I went to my sister in laws (she just got her RN) and had her help me get my meds/cocktail all drawn up. I was shaking and sweating and I was hoping she knew how to do the cath, but she has only done math caths. She offered me her bathroom when I explained how embarrassed I was about doing it at my moms. The Dr's. office forgot the viscous lidocaine jelly for the cath so then I had to call about that and get a script. Then I am shaky and crying and freaking about about having to cath myself. We got everything ready and I sat on the toilet. My hubby bought a mirror that I was able to set between the seat and lid and it swiveled so I could see what I was doing. So here I am in my sister in laws bathroom, she stayed outside the door in case I needed help. I got the cath in the "hole" but it wouldn't go in. I wanted to bawl, the sweat was pouring down my face and I was shaking. I finally asked my SIL to get my hubby. :-[He came in and kneeled in front of the toilet and tried to help. I finally realized what was wrong and I had to lean back and it worked! I got the cath in! Of course then I was holding it and trying to figure out how to get the installation in and the end doesn't fit on the 20cc syringe correctly and we got most of it in and pulled out the cath. By the time I got done I felt like I had run a marathon. I'm totally taking a shower tonight because the sweat was literally dripping into my eyes because I was freaking out so bad about all of this. It didn't hurt at all! I was given the smallest Ped caths. and its so tiny and once I figure it out I should be able to do it pretty quick. I'm supposed to do it 3x a day just at the beginning until things get healed inside. But anyways... that was my horror story for the day. I'm calmed down now but it was very stressful, very, very stressful! I know my SIL would have helped but I just couldn't get over the embarrassment and she at least helped me get my meds mixed since I have never done that before. All in all, quite an interesting experience. My body sucks by the way!!! :P
    Diagnosed April 2009 with stage IV endometriosis
    Hysterectomy 2009 - lost both ovaries to endo
    Dx with IC sept 6th, 2010

    Current Meds:
    Zyrtec
    Flonase
    Hydroxzine
    Albuterol
    Atrovent
    Tramadol
    Ranitidine
    Protonix
    Hyophen

    Comment


    • #17
      You should be so proud! You did it!
      Conditions:Migraine, Epilepsy, Adenomyosis, Left Hydrosalpinx (inflamed,blocked fallopian tube), Neurogenic, Overactive bladder
      Myofacsial pain disorder/Pelvic floor dysfunction
      Medications:
      Neurontin,Topamax,Vesicare,Hydoxizine,Urelle,Zanaflex,
      Tramadol,Cystoprotek,Naproxen.

      Comment


      • #18
        It will get easier --- congratulations --- you DID it.

        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


        • #19
          I got the catheter supplies ordered up but I don't know how I'm going to get the syringes, needles, meds, etc... I asked at Walmart today and they didn't have any of the things I need on my list.
          Diagnosed April 2009 with stage IV endometriosis
          Hysterectomy 2009 - lost both ovaries to endo
          Dx with IC sept 6th, 2010

          Current Meds:
          Zyrtec
          Flonase
          Hydroxzine
          Albuterol
          Atrovent
          Tramadol
          Ranitidine
          Protonix
          Hyophen

          Comment


          • #20
            Woke up to wet rainy miserable fall day and boy am I having a hard time without the coffee. Last winter I made the switch to decaff because the caffeine was really hard on my body. Trying to not have any coffee... well that is a lot harder on a day like today!
            Diagnosed April 2009 with stage IV endometriosis
            Hysterectomy 2009 - lost both ovaries to endo
            Dx with IC sept 6th, 2010

            Current Meds:
            Zyrtec
            Flonase
            Hydroxzine
            Albuterol
            Atrovent
            Tramadol
            Ranitidine
            Protonix
            Hyophen

            Comment


            • #21
              Scared to take Elmiron

              I am new to IC and have not been diagnosed but have the symptoms for the past 6 weeks. Have had frequency for a few years but suddenly got worse and pain in pelvis one early Sunday morning in August and had awful pain in bladder area. Went to urologist said I did not have infection, gave me Sanctura SR which landed me in the hospital with heart palpitations. I was given vicodin and sent home. Went back to urologist (heartless urologist) who scheduled me for Urodynamics end of September, so I am supposed to sit here with no pain meds until when? I decided to go to urologist #2 who did urodynamics and cystoscopy same day (that was fun) and said nothing is wrong must be neurological. Went to neurologist did mri's and nerve test, no nothing wrong there. Went to gyn dr and she said sounds like IC and here is a RX for Elmiron but I am so scared to take it because it is a blood thinner and I am prone to nose bleeds especially this time of year when the weather gets cold and dry ( I have very sensitive nasal membrane) due to over use of nasal sprays in the past, so just don't know what to do. I have tried Elavil but it gave me heart pounding and skipped heartbeat but it DID take away the pain, cannot win. Xanax takes the edge off but how much of that can I take? I am waiting to see a pelvic pain specialist ( she is a urogyn) but that is Nov 10th. I will take any suggestions please. I am ultra strict on the diet and take prelief if I think anything may be acidic . I am also taking Cystoprek but its so expensive, God! Thank you everyone for all your posts it is so comforting!

              Originally posted by Barbm View Post
              Note from ICNDonna: The following are only suggestions --- what works for another IC patient may not work at all for you.



              1. try Elmiron. this is like lotion for your bladder
              2. Add amitryptilline.25 to 50 mg. This will block the pain signal that goes from bladder to brain
              3. Add ranitidine 300mg daily. This is an H2 blocker and stops the degranulation of mast cells that causes the pain.It is commonly used for heartburn and can be obtained over the counter.
              4. Follow the ic diet carefully
              5. Do vaginal stretching and pelvic physical therapy.. You can find some great books for this on this web site.
              6. Get some narcotic pain medication for severe pain
              7. Do all the above and then be patient.. YOU WILL GET BETTER BUT IT WILL TAKE TIME!

              Comment

              Working...
              X