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Successful Heparin instill

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  • Kathy in Canada
    replied
    Instills

    Hi Charisse,

    I'm not sure why the doctor's office used alcohol wipes to clean you off before the instillation. That would hurt. I'm a registered nurse and I never would clean a person off with alcohol wipes before catheterizing them.

    My urologist's office uses Benzalkonium Chloride Towelettes. I use them at home for my own instillations. Right after I put the instillation in and remove the catheter, I rinse my privates off with water to get the Benzalkonium Chloride off. I keep the instillation in for at least an hour. After I urinate it out, I rinse myself off iagain with water to get the instillation off the external area in case it is irritating.

    Good Luck

    Kathy

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  • cia
    replied
    I have such horrible urethral pain from the instills that they are "almost" not worth it. The jury is actually still out as to whether I will try them again. The only thing, other than Percocet, that helps me with the urethral pain is heat or ice between the legs. Heat always works for me but I guess ice works too. I have to use a real hot pack, the little stick on ones don't do it. Problem is, you can't really do anything while you have a hot pack on your urethra.
    Last edited by cia; 07-04-2007, 03:35 PM. Reason: grammar

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  • Janvier2
    replied
    Temporary?

    --------------------------------------------------------------------------------

    Hi there.

    During an instill, Uro tried a bigger catheter to get the Elmiron in too and still a week later I am in incredible pain. Does it go away and how long does it take? Help!

    Thanks.

    Leave a comment:


  • Dixiefireball
    replied
    I must agree the non latex cath work much better. At least they do for me. the red cath are latex they caused me a great deal of burning, and irradiation. Lidocane may also be helpful. However it needs time to work before an installment is applied five to ten mins before hand should do the trick.

    Good Luck
    Dixie

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  • kadi
    replied
    To make cathing more comfortable, I tried a bunch of different sizes & types (latex, nonlatex). I also take a warm shower first to relax & rinse with warm water after the instillation... Heating pad helps too.

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  • Charisse
    replied
    I think personally for me that it's the action of putting a catheter in that puts me into the flare and not so much what kind of medication they are instilling. Of course it's hard to tell but that's what it feels like because the pain usually starts in my urethra and within a few hours after my instill I get bad bladder cramping and this lasts for 3 days at a pretty bad intensity and then slowly over the period of a week I will get better. Today is one week since my last instill and I'm just starting to feel like the pain level is going down. Does anyone else feel this way about the catheters? My second one didn't hurt during the process because she used lidocaine and a red rubber catheter but a few hours later the pain kicked in.

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  • L. Thomas
    replied
    Originally posted by Kathleen Philli View Post
    From what I have read there is tremendous variability among patients with respect to who responds to what.
    That's it in a nutshell. Just like any other treatment. Some have great results and others have horrible experiences . There are numerous recipes for instillations. Some are only a few cc's and only have 3 ingredients like mine and others are as large as 100cc and have 4 or 5 ingredients.

    The prescription for using instills are just as varied . I use them as needed. Others only have instills in the office. Some have 1 a week for 6 weeks and some have 3 a week for 6 weeks.

    Just remember it's like any other disease. Instills work for some :woohoo: and not for others . If it works for you great. If it doesn't work for you don't give up. There are lots of treatments.

    The first thing is having a diagnosis of IC. The second is a physician that will work with you.

    Don't forget
    You have support here.


    Leave a comment:


  • Kathleen Philli
    replied
    From what I have read there is tremendous variability among patients with respect to who responds to what. I got worse with DMSO, but responded beautifully to elmiron. I am in a flare so I decided to try heparin instills with xylocaine. So far I am not too impressed. I don't think they make me worse but I have certainly not had a dramatic improvement. I have been using the Lofric catheter that I heard about here and it is really great. No urethral pain at all before, during or afterwards. I asked my uro's nurse why he does not use them. She said it is because they cost too much. They are not all that expensive so I can't believe that he would let me suffer for two days just to save a few cents. Boy that ****** me off. I buy and bring my own now.

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  • Charisse
    replied
    Did the urethral pain develop after your instill? It might be irritation from the catheter. I have had worsening pain after my instills so my UroGYN has decided today that we won't continue those. In fact he's not even sure I have IC now because he thinks the Heparin should have offered immediate relief although from what I've read here that's not always true. I just want to know what is going on with me! I am not sure what besides Heparin was put into the instill. I know they used lidocaine the second time which made the procedure a lot less painful.

    Leave a comment:


  • Arizonian
    replied
    Heparin Instills

    I just started my first Heparin instill tonight with lidocaine and sodium bicarbonate. So, I'm waiting for the results to come in. I've been in the worst 3 week flare that I've ever heard of or experienced. I've tried 2 other types of instills plus 75 DMSO instills with little success. My questions is what combinations are you all trying with your Heparin instillations?
    Also, I have tremendous, new urethral pain and cannot figure out why it has developed. Any advice is welcome! I'm on the elimination diet to find out if it is a food trigger but no luck so far. Thanks!

    Leave a comment:


  • Charisse
    replied
    I spoke too soon. The cramping returned last night even worse. I took a Pyridium and a hot shower and laid in bed and finally fell asleep. I always feel better after laying down but as soon as I get up again the pain returns. I feel like this last instill has inflamed my bladder again. I was out of a flare before I had it done and now it seems to have flared me up again. The cramping gets worse when I bend over or do any kind of activity.

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  • Berkshire Road
    replied
    I have only had urethral pain after instills when I was first learning to do them myself -- I guess I didn't have to smoothest technique, LOL. Now I've learned to relax and breathe out as the catheter goes in, and I hardly feel it at all. No pain afterwards. Maybe when you get more comfortable with the process you won't have that soreness afterwards, but to answer your question, it is pretty common for some soreness to occur. I wouldn't worry about it as long as it goes away within a few days and as long as you're not bleeding.

    Leave a comment:


  • L. Thomas
    replied
    A number of people seem to have that same experience with urethra pain. They say the pain is only temporary.

    Some think that a latex free cath help them.
    Using lidocaine gel before the catheter is inserted has helped some.
    I have also read that the "red" rubber cath seems to be more comfortable for some. ( I think they the nurses at the hospital call them "easy out" catheters)

    Leave a comment:


  • Charisse
    replied
    I am hoping all I need is the instills but trying not to get too excited yet. Is it normal to have some urethra discomfort after the instills? The menstrual type cramping pain is gone for now but my uretha feels pretty sore.

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  • L. Thomas
    replied
    It sounds like you are having some success. I hope everything keep going great.

    I started with 6 in office instills at 3 a week then I started home instills. I had instant relief. Instills are all I need.

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