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  • 1st instill today....

    I didn't realize until I got there that I wouldn't see the doctor, the nurse does the instills. I guess that's ok because she was very sweet and patient with me. She used so much lidocane on me, I felt sorry for her. I guess she felt sorry for me too. Insertion of the cath was the hardest part. I always feel like there are bees in my urinary tract and when she put the cath in I literally lifted off the table. The actual meds in the bladder I didnt feel at all. I had to lay on my side, back, other side all for 10 minutes then she let me use the bathroom and I again almost levitated off the toilet. I must just be very hypersentative in the UT. Anyway, 5 more to go. I did ask her if the URO doc could start giving me my pain meds so I wouldnt have so many doctors involved and he said no, get them from the family practice doctor. I also was going to the Pain Management clinic because of a bulging disc with a tear and having epidurals so I had the fentynal patch already and that doctor told me to use two if I needed them. I just hate having so many doctors. So I called my FP and asked them if I could have something stronger than the Ultram, of course I had to leave a message and they never got back with me as usual. I hate that place. I have ultram here to take but they just dont help with the spasms and contractions I get. The only thing I can compare these spasms to is extremely painful braxton-hicks but only 100 times worse. I cannot ride in the car because the bumpy roads drive me crazy. Anyway, just wanted you to know I'm still alive, very tired and sore and cranky but here.



    **Normal is just a cycle on the washing machine**


    Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
    Graphic Designer.


    Babyz Breath


    Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
    Daily Meds:

    Trileptal 600 mg for Bi Polar
    Lexapro
    Respiradal Mood stabalizer
    Baclofen
    Vicoden, 5.5 as needed for pain/stopped
    Bentyl for bladder spasms
    Urelle for burning
    Prevacid for Acid Reflux
    Lorazapem for Anxiety attacks as needed
    Ultram for pain
    Fentanyl Patch 75 mcg for pain/stopped due to skin rash
    Vitorin

  • #2
    Eeeww, I used to push away every time the nurses started putting the cath in. They also had me lay on each side and back for 10 minutes. How cool, I never heard anyone else say this. It could be the way the nurse is doing it. Have to say when Doc started do the instills the cath went in much better. The first time he did it he held down on the bladder area expecting me to move I suppose but didn't need to. What instill are you having done? Notice any difference yet? Maybe you could take that pill for when it hurts to pee. Can not think of the stupid things name. Hope with each instill things get better for you!

    Comment


    • #3
      Hi!

      Today was my first day and they used Elmiron mixed with some other stuff that I couldnt pronouce or remember. I know it burned a little bit but my problem was more with the cath. I really dont feel any different but they told me I probably wont until about the 4 or 5 week.

      I have tried OTC Uristat, I was living on that stuff for a few weeks but it never helped. It actually made it worse. Becaue of the medicine I was taking, it burnt me in my UT and bladder but only enough that it hurts. They can't really see anything on the cystoscope (sp?) The nurse tried to be very gentle and I don't think it was her fault. I'm burning so badly down there and even the lidocane burned me. I'm not sure if there is anything else out there I could get over the counter??



      **Normal is just a cycle on the washing machine**


      Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
      Graphic Designer.


      Babyz Breath


      Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
      Daily Meds:

      Trileptal 600 mg for Bi Polar
      Lexapro
      Respiradal Mood stabalizer
      Baclofen
      Vicoden, 5.5 as needed for pain/stopped
      Bentyl for bladder spasms
      Urelle for burning
      Prevacid for Acid Reflux
      Lorazapem for Anxiety attacks as needed
      Ultram for pain
      Fentanyl Patch 75 mcg for pain/stopped due to skin rash
      Vitorin

      Comment


      • #4
        Thanks for the update, Cindy.

        I'm sorry you had trouble with the catheter. I have a couple of ideas about that. First, as I mentioned earlier (I think) try very hard to relax; breathe out as the cath is going in. Second, ask them what size cath they are using. People who are very sensitive to catheterization sometimes respond better if a smaller cath is used. I use 10f. If they tell you a larger number than that, ask them is it would be possible to use something smaller. And third, ask them if they can put lidocaine on the catheter itself, so it helps to numb your urethra as it goes in.

        I think the lying in different positions is to make sure the medication reaches all of your bladder, since it does not fill the bladder. The longer you can hold it in, the better (or so my doctor says). I find that can be uncomfortable, so I usually take a painkiller right before the instillation, whether I'm actually in pain or not. Because I know I'm going to be in pain from "holding it" in an hour or two, and the painkiller will be at peak effectiveness at that point. (Of course, first you have to get good painkillers.) I also like to take my muscle relaxant about 1/2 hour before I'm going to pee it out, because sometimes after holding it for so long, it's hard to go. The muscle relaxant helps me go without straining; straining is bad.

        Maybe next time you go, you could ask the nurse to write down the names of the meds she's instilling. Because if it's really hurting, you might be able to ask the doctor about switching to a different combination. There are several different "cocktails" in use these days.

        I hope you get your pain meds straightened out soon. That's certainly an issue that most of us have had to deal with -- getting our doctors to understand how very painful this condition is, and getting them to prescribe accordingly.

        Anyway, I'm glad you survived it. I hope the next one will be easier.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn
        ___________________________________________________

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


        On the Beach with IC

        Comment


        • #5
          Thanks so much Caroline,

          She used a 16f size? She said 16 and that looked pretty small, nothing compared to what I have seen in hospitals, those things looked like a hose!!

          I will ask her to write all that down for me. This morning I was so nervous I actually forgot everything I was going to ask. I had the worse case of dry mouth, I think from the Detrol LA. She only asked me to hold it in for 30 minutes and I assume they will try and have me hold it for longer periods as we go?

          You all have been such a great help and support...thanks so much. Now if I can only find a doctor that will give me some meds so I'm not walking the floors all day and night.



          **Normal is just a cycle on the washing machine**


          Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
          Graphic Designer.


          Babyz Breath


          Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
          Daily Meds:

          Trileptal 600 mg for Bi Polar
          Lexapro
          Respiradal Mood stabalizer
          Baclofen
          Vicoden, 5.5 as needed for pain/stopped
          Bentyl for bladder spasms
          Urelle for burning
          Prevacid for Acid Reflux
          Lorazapem for Anxiety attacks as needed
          Ultram for pain
          Fentanyl Patch 75 mcg for pain/stopped due to skin rash
          Vitorin

          Comment


          • #6
            Wow, a 16 French... that's rather large for an IC patient. Most IC patients say they feel most comfortable in the 8-12 French range, although some use pediatric feeding tubes, which are even smaller than an 8 Fr. (If you're curious, one "French unit" is one-third of a millimeter.) I personally prefer a 12 French catheter.

            As for the rolling around, it's not technically necessary. The bladder walls are meant to touch each other when the organ is completely empty. Therefore, no matter what the volume of the instill solution, it will touch the entire inner surface area of the bladder. Imagine blowing up a balloon -- even if you just blow one breath into the balloon, the entire inside surface is in contact with the air you blew into it, just as it would be if you filled it all the way up.

            As for holding times, you will probably be asked to hold the instill for 30 minutes each time. Most medications work within that time period, and holding it longer is not necessary.

            Finally, definitely find out EXACTLY what is in your instills. Remember, it is YOUR BODY, and you have every right to know what someone is inserting into it
            ****
            Jen

            *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.

            Comment


            • #7
              Cindy,

              I'm glad your doing instills. They didnt really help me but after reading your post and the advice the other girls gave you I'm beginning to think that maybe they would have worked if I was given proper instructions. My nurse never told me what was in the cocktail or how long to hold it. She NEVER used licodine.... that's why I was in so much pain afterwards. I will never do another cocktail. It was pure torture for me. I switched uro's finally..

              Your uro told you he wont give you pain meds?? Why is that? I think its absolutly neccesary for you to have them. Uristat doesnt work for me, I needed something stronger. I take Ultram but that doesnt work for you. Maybe you could talk to your primary or the pain management clinic. They of all people should be able to pescribe you medication. I hope all goes well with the cocktails.

              If you dont get the relief needed maybe start thinking of seeing another uro??

              Next time you go to the dr... before hand right down you questions and try keeping a diary of everything you eat and everytime you pee and your pain. It will help.

              (((Hugs)))

              Rachel
              ***Rachel***

              Dance like no one is watching
              Love like you've never been hurt
              Live today like it's your last

              Dxd with IC in June '06

              Comment


              • #8
                I have instills also and do not like pain at all. Tomorrow is my fourth one and so far the second one was the easiest for me. The first was really bad Even though the nurse used pain med. I asked for something to take before I had the treatment done. They finally gave me darvocet and it works. I hope tomorrows treatment is better. I have what my doctor calls RHIMSO. I also do mine every other week and hold it for 15 min. .Bamafan

                Comment


                • #9
                  Glad you got the first one over with! My eyes almost bugged out of my head when I saw they used a 16F! I agree with Sarojeni, that is BIG! Mine are 5 FRench. (They use this size for infant feeding tubes, so they are tiny.) I have been cathed with the big ones at the hospital and truly believe that, (like everything else), size matters!! Since the cath was painful, I'd definately ask them to use a smaller one. I also agree with the other suggestions of the wonderful ladies. It looks like they gave you great advice!

                  I hope they get easier with each time the do it and that you start getting relief soon.

                  Hugs,
                  Amy

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