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Instillations working well/ New PCM GREAT!

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  • Instillations working well/ New PCM GREAT!

    Hi everyone,

    I am just writing to give you an update. I started the rescue instillations at home last week, after much fighting with TriCare to pay for them (which they finally did). Anyway, it has made a wonderful difference. I have taken much less pain medication...and believe it or not, I am back at work...just for today. I substitute teach through a temporary agency, so this job has worked out perfectly with my doctors' appts. and when I don't feel so well.

    So, the instillations I am using are: Heparin & Lidocaine. I DID however end up with a UTI last week that had to be treated because when the medical assistant at the urology office taught me to self-cath, she told me I could use the same catheter over again as long as I washed it with anti-bacterial soap and hot water. However, I did this and I *think* it might have caused my current UTI. I am taking Levaquin, 500mg for 10 days, once per day.

    Anyway, when my husband and I went to the pharmacy to learn how to mix the medications, the nurse who worked at the compound pharmacy told me to boil the catheter if I wished to re-use it. However, I did this once and I have decided that reusing the catheters more than once might be the culprit. After all, this nurse at the pharmacy used to work with urological surgeons and he said he has seen people actually fold the in and out catheters up and put them (without the plastic) in their wallets (esp. men, he said).

    Anyway, so I guess in a short time I learned my lesson. Actually the instills are helping my burning and the symptoms that come with the urinary tract infection. The GREAT thing is that I was able to get in to see my off-base provider in time enough to get antibiotics before the infection progressed into pyelonephritis and ended up in my kidneys, causing nausea/vomiting/dehydration (which, so many times has happened when waiting for an appointment on base with family practice).

    Another blessing is that I have a great Primary Care provider for the moment off the military base and she listens so well. It's so nice to be treated with respect and listened to well. On base, it was completely different. I saw a different provider each time and they only had 15 minutes with me, if that. Also, a sign was on the back of the door that stated, "You may only address ONE issue at a time..." Well, as we know us ICer's have so many more issues than just one at a time. And, if you waited five to seven days just to get that first appt. to address one issue, you'd need about five to six more appts...if say you weren't sleeping, needed RX refills, needed referrals to specialists, etc. This is what we went through trying to use the base facilities.

    Anyway, this message was went to be I won't rant anymore about the military docs. At least for a year (as long as my husband and I are here), things should be better.

    I am so thankful for that and this board!

    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

  • #2
    I followed my urogynecologist instructions. I haven't had any problems in three years, but there is always tomorrow.

    1. After the instillation wash only the outside of the catheter with warm soapy water. His reasoning is everything you put inside the catheter is sterlie.

    2.After washing the outside wrap the catheter in a clean washcloth. This keeps bacteria from forming on the outside and inside because it allows it to dry on the inside and outside. Tissue leaves lint fibers that cause problems. Wrapping or putting the catherter in plasitic doesn't let it dry out and bacteria can form. I wrap it in the washcolth and put it in one of those little cloth make-up bags.

    3. You may use the catheter 4 times. I do when I am at home but I take a packaged one when I do an instill anywhere else. I throw away the catheter, syringe and needle at home. I don't want to help any "druggies". I understand they go through trash cans looking for needles and syringes.
    Last edited by L. Thomas; 03-10-2007, 02:45 AM.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation:

    Institute of Female Pelvic Medicine (J. Dell, My MD)
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas


    • #3
      If you're using the red rubber catheters, it's true that you can boil them. I when I used to use those, I would wash them twice with antibacterial soap, rinse very well, and boil for 15 minutes. While the catheter was boiling, I'd wash the inside of a Zip-Lok bag with antibaterial soap, rinse well, and pat dry with a clean paper towel. Once the catheter was finished boiling, I'd dump the water out, let the catheter cool a little, pick it up by the funnel end with two fingers (NEVER touch the end that goes in the urethra!), and put it in the ZipLok. I'd zip up the bag almost all the way, leaving a little hole to allow excess water to escape from, and then after about half an hour I'd close it the rest of the way and store it with my other instill stuff. I used them about three times and then tossed them.

      Now, I am using these plastic catheters (who knows why they changed the script) that can't be boiled - they melt. These are single use catheters. But I re-use my syringe barrel (the 60cc one used to push the instill into the catheter). I wash it with antibacterial soap, rinse well, put it in a ZipLok wet, and microwave for about 2 minutes on high -- the steam from the excess water works like an autoclave and sterilizes the syringe barrel. (Just make sure you leave the bag open a bit... it will explode otherwise LOL)

      The infections can come from all sorts of places... make sure you clean yourself off before the instill too with some wipes or even just water to reduce bacteria, and make sure the catheter touches NOTHING but your urethra. You can also ask your doctor for a prescription for prophylactic antibiotics -- I do this now. I take 50mg Macrobid after each instill to help prevent infection.


      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.


      • #4
        Thanks guys for all your helpful insights. I have started boiling my red rubber catheters and using them only three times, then trashing them. They really are relatively inexpensive, so it's not a big deal if I have to use two a week. They are only about $3 each at the pharmacy where I that's about six bucks a week to spare me from UTIs.

        Take Care!
        Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.