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Getting there

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  • Getting there

    I have the interstim. It's still new in my body but I have had some days where I can go 3.5 hours. It's a daily thing right now. I have massive retention too which does not help. I have a severe case of IC and have tried it all. I'm still willing to try it all. But I feel if I have had some days that are good that maybe there will be more. It's like any disease that someone has... you have good days and bad days right? I must keep pushing on even though somtimes when I have a bad day I feel like giving up all over again. IC is such a roller coaster for all of our family and friends to ride on too. I can't even imagine how I would be if my fiance had IC. I don't know that I would have been as supportive as he has. I have to confess I don't think I would have been able to do it without him. He listens to me all day and all night complaining and crying.


  • #2
    Welcome Alley
    I also have the implant and have had it for about 19 months now. I have good days and I have bad days but I am no where near what I was pre-surgery. I was using the bathroom every 15 minutes so just to beable to go an hour now is a miracle for me. I agree with you 100%. If my hubby had this, I don't know if I would have the courage to be as supportive as he is. And, that scares me.

    I suffer from retention too and there are still some days when I have to self-cath and my uro told me that I may always have to. On my last adjustment, they did do something that did help but it hasn't gone away completely.

    I hope you take the time to look over all the goodies here on the ICN and become a part of our family teri
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      Welcome Alley to the board..
      I am glad to hear you are having some help with the InterStim!!

      I had the InterStim Implant now almost two years..
      I go about four to five a days and I go as long as three hours as well..
      I hope soon your retention will get a little bit better for you Alley..

      It is so nice to have someone that cares for you and is there for Alley...

      Thanks for posting Alley....

      Hugs: Debbie

      Thinking positive has got me through to another day!!


      • #4
        Hi Alley.

        I have had the interstim for about 8 months now and just in the past while things seem to be doing not too bad. I have to be so careful what I eat and drink. I still suffer from some retention but the Nortryptyline that I take will also cause some retention.
        Alot of time I still hold about 100ml and have to cath it out so I feel like I have completed peeing. Probably something I will always have to do. But I tell you it has taken a few adjustments and I get back pain from sitting or standing toolong. I was doing not bad in that dept until when drove to Florida from Toronto and that nearly did my back in It feels mainly where the wire goes across. But my life is nothing like it was for the past three years. Life with demerol and foley cathetors. It takes time and adjustments to get the body in tune with this device. If you feel you are retaining alot more I think then you should go in for an adjustment. I find it always helps me. Sometimes he (uro) has told me I keep the unit turned to low so when I feel a flare coming on I crank it up. I was one of the lucky ones that it helped with the bloating pain and constipation. I still take herbs for constipation and I also am going thru menopause. (sometimes I hope men come back as women to go through the meno as well as having IC especially some of the drs I have seem in the past. I saw 5 uros before I found the one who did the implant and I found out about him on this board. Thanks to DebbieB.


        • #5
          I have had the insterstim about 8 months.
          ON a good day, I have gone from holding 50 ml to holding 110 ml. On a bad day I continue to hold about 35.
          I could never drink 8 glasses of water.
          Next weekend, we are flying to the Dominician Republic. I have my interstim card ready for security.