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question about (self) installation

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  • carla_2004
    replied
    Ouch, Jen! I was just reading your post, admiring your bravery, thinking to myself, "what if you insert it too far??" then I read the part where you hit your HunnersUlcer- ouch, ouch.... I'm cringing here just reading it!

    I do have a nice Ott Light I can use... plus I can see myself in true natural lighting.... oh joy! LOL First I have to get myself an appt. with an IC uro., which I am attempting to do right at the moment.

    Thanks to L.Thomas, too, for sending along the instructions she had.

    Regards, Carla

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  • Sarojini
    replied
    When I learned to cath myself, I was going to a urologist who wasn't too psyched about having me try it at home (this was my very first uro, before I found my last two great ones). They knew I was in the medical field, so they just tossed an instruction sheet and some catheters at me and said, "Go for it."

    So, the first thing I did was put on a hiker's headlamp to illuminate the crotch area when I looked down, and I examined my genitals with a mirror to locate the urethral opening (it helps to bear down just a tiny bit as if you're straining to pee, because that can get the urethra out of "hiding" -- sometimes it gets kinda closed off or smooshed up near the clitoris).

    I already knew about sterility from working in a microbiological laboratory for years, so I was able to deal with that (it had guidelines on the sheet they gave me -- you'll get details from your doc too, but the main issues are washing your hands and preferably also washing the genital area if you're in a place to do so, making sure your syringes for mixing your instill are clean, and making sure that the catheter touches NOTHING other than your urethra).

    Then I got everything together within reach, lubed a catheter with KY jelly, shrugged, and aimed... got it on the first shot I think one of the reasons I got it right away was that I spent a lot of time inspecting myself... and I was relaxed. That is the single most important thing I can tell you -- the more nervous you get, the more difficult it gets.

    I did shove the catheter in a bit too far that first time, and hit the Hunner's ulcer I have on the top dome of my bladder, which hurt like mad... but that just taught me to go slower.

    Now I'm an old pro -- it doesn't hurt at all when I do it, but it can be irritating if someone else has to do it for some reason. I've even cathed in the back of a moving car on the interstate going through St. Louis.... LOL

    Not everyone has such immediate good luck with it, but most people find it only takes a few times to get decent at it. It can take a few sessions to get it right, but if your doctor is any good, he or his nurse should be willing to work with you in the office if necessary so you learn it well... don't settle for being left on your own if you feel you need more help.

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  • L. Thomas
    replied
    I didn't use lidocaine but a lot of people do.

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  • carla_2004
    replied
    Thank you Donna, Kadi, and L.Thomas for your replies.

    Was it hard to learn to do yourself? Do you use lidocaine to numb the urethra first?

    I would love to see the instructions...but only as a tool to decide if I want to learn how to do this.

    Thanks! Carla

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  • L. Thomas
    replied
    My first and only treatment has been instillations. After the first 4 I started doing them at home. I agree with IC Donna. I prefer to cath myself even if it is a larger cath than I use at home.

    I use 8fr pediatricic feeding tube. It is much smaller than the ones in the MD's. If you have an understanding MD they will help you through this. The last urodynamics I had it was a 24fr and I didn't have problems wiht it. I have notes on the instructions that helped me if you would like I would be happy to PM them to you.

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  • kadi
    replied
    Rescue instillations have helped me a lot & while having the doctor or nurse catheterize me is uncomfortable, cathing myself is no big deal. The instillations have restored much of my quality of life.
    Good luck!

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  • ICNDonna
    replied
    For me, it's much less uncomfortable to insert a catheter if I do it myself. If you feel you'd like to try it, I suggest you talk with your uro about learning how.

    Donna

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  • carla_2004
    replied
    Thanks, Jen, for your quick answer. Hopefully, this flare will come under control soon. Actually, my uro did prescribe me some lidocaine to help for when "love" really causes soreness in the urethra area. Of course, "love" is certainly the last thing on my mind since I'm flaring.

    How are you doing these days?

    Carla
    Northern CA

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  • Sarojini
    replied
    I guess there probably is no answer to your first question about at what point in the progression of IC -- in most, IC doesn't progress per se, and also, the decision to do instillations doesn't depend on anything like that anyway. It's just a treatment option that doctors may suggest at any time, or that you may decide to bring up with your doctor yourself. So, if you think that perhaps you want to do this, go for it Ask your doctor!! If you have to you can bring in some info on these instills to your doc to convince him, give him recipes, etc.

    A lot of ICers do use pediatric catheters (8 or 10 Fr), and some even use a pediatric feeding tube, which is even smaller. I personally use either a 12 or 14 Fr. Lidocaine gel is also a common way to lubricate and numb the urethra first. Your doc should be able to prescribe that.

    Leave a comment:


  • carla_2004
    started a topic question about (self) installation

    question about (self) installation

    For those of you who do this at home... at what point in the progression of IC did you try this??? Cath-ing feels like razor blades going into my urethra, so do you use a juvenile sized cath? Use lidocaine to numb it first?

    Tonight I am really struggling with an IC flare, my breakthrough meds are not helping very much. I could see that if I had this as an option in my toolbox, I would use it.

    Thanks for answering.... Regards, Carla
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