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Instillations - PLEASE HELP

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    momw/ic
    ICN Member

  • momw/ic
    replied
    There are many people who do the installations themselves once or twice a day. I used to but moved out of state and my new uro won't let me do it yet. I say yet because I'm gonna keep bugging him until he lets me. It's a small town and he has never had anyone make such a request so it's a new concept to him. I keep telling him "that doesn't make it wrong...just makes it different".

    In my opinion the self home instills have a much better result. It's easier, you can do them when you need them without having to wait for the doc office to be open or have an appointment. For me, there was less irritation and pain from the catheter because doing yourself causes less trauma to the body since you can go slow, adjust the catheter size if you want and lubricate with lidocaine jelly if you want. A lot of docs don't use numbing gel at all when the use catheters on patients. If you are doing them at home you don't have to try to hold the meds in as long either since you know you will get another later that day or the next day. If your doc is concerned about that it's just another pro for self instills. I don't ever hold mine more than 2 hours - if I can wait that long. Did your doc say why she wants you to stop doing them?

    If she won't let you do home instills maybe another uro or your family doc would let you?

    Leave a comment:

  • Sharyn
    ICN Member

  • Sharyn
    replied
    Instills

    I have instills done at the doctor's office for about 3 mos.
    Before that I had them once a month and was doing very well. Today, immediately after the instill I had pain on a scale of 10. I used uribelle and a vicodine. Still have the pain. Anyone else experice this and what did they do. I put in a call to the doc.

    Leave a comment:

  • kadi
    Support Leader

  • kadi
    replied
    I do instillations of Marcaine, Sodium Bicarbonate, Heparin, Sterile Water twice daily. They've given me back quality of life. My IC is also severe. Before I did this, I tried Elmiron, Atarax, Tagamet, DMSO instillations, change of birth control pills 3 times, Detrol, Detrol LA, Levbid, antibiotics-- these all failed. I got partial relief from Elavil, Oxybutynin, Flexeril, Necon 1/35, physical therapy - but not enough. I began doing the instillations daily in 2005 and increased them to twice daily in 2008, I believe. I do also have pain medication that I use every night and also during the day when I flare above my meds, which can be several times a week.

    Without the instillations, my quality of life is very poor. With the instillations, I am able to work full-time as a teacher, exercise, travel (with some restrictions, not like before, but still good!), make plans and actually keep them.

    I do see you're holding the medicine for 5 hours. Is that ok for you? If I do that, I get symptoms from the irritation of the meds. I hold the solution for usually 1 hour, at most 2.

    I hope this information is helpful to you
    Best,

    Leave a comment:

  • Jamie1983
    ICN Member

  • Jamie1983
    started a topic Instillations - PLEASE HELP

    Instillations - PLEASE HELP

    Hello,

    I have been getting weekly instillations for my IC since January. My IC is very severe. My cocktail includes Elmiron, Sodium Biocarb, Lidocaine, and sterile saline. These instillations instantly take away my pain. However, once I pee them out - the pain comes back. I do have some relief from the instillations, as I was MUCH worse in January than I am now. However, my doctor wants to stop doing them. This completely devastates me. I wanted to ask her to learn how to do them at home, and hopefully do them everyday - they work way better than a pain killer and allow me to live a normal life while I have them in. I have been able to hold them in for a full 5 hours.

    Does anyone do daily instillations? Does anyone do weekly instillations for over 8 months? Is there ANY research that shows instillations can negatively affect you in the long run?

    I see my actual doctor next week and really need to get as much input as possible to convince her to let me continue the instillations. I will be heart broken if she makes me stop and my pain goes back to a 10.

    Any feedback is welcome - please - I want to bring the responses to my doctor next week. I am extremely upset and I know there are people out there who have been getting instillations longer than me and who self-cath at home and give themselves an instillation everyday - that is my goal.

    Please help!!

    Thanks,
    Jamie
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