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  • Scared to get an in office instill done...

    I have been told that I am probably going to have to start these. I am sssooo scared. I read the other members post on here about how bad it was....and I am scared. I have one done when I was about 10 years old....and it HURT SO BAD. I started crying when the nurse said she was cleaning me...I still don't believe she was cleaning me. I think she was putting the tube in. I never never want to go through that again. Are these really painful???



    Diagnosed with IC 3-30-2003

    Flare ups 1 time a month lasts for days.

  • #2
    If I relax, they aren't bad at all, just slightly uncomfortable. The solution instilled may hurt, but if you can relax and if they use a small catheter, the insertion isn't horrible.

    Donna
    Stay safe


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    Comment


    • #3
      I have been doing home instills since 2004 on the average of 3-4 a week. I had 6 instills in the office before I started doing them at home. I have not had pain or discomfort from any of the instillations.

      There are a few things that seem to cause discomfort.
      1)Not being able to relax when the catheter is inserted (ask that you be told to inhale just before they insert the catheter and ask them to as say "exhale" as they insert the catheter. When you exhale your muscles naturally relax.

      2)Size of the catheter The ones that I use and they used in the office are very small. Actually it is a 8fr pediatric feeding tube.
      2)The catheter being advanced to quickly and hitting the back wall of the bladder. This rarely happens
      3)Steroids used in the instill..just ask
      4)Some people are sensitive to lidocaine
      5)Some people are sensitive to latex

      Share your concerns with the nurse or whoever is doing the instill. I would hope they would be sensitive to you feelings, especially since it is new to you.

      I have not had any of these problems with instills. One thing that some people ask is that the entrance to the urethra be numbed with lidocaine gel first. My urogyne always does this.

      We are all different when it comes to pain. I have to have my hand numbed before they put in an IV because it hurts me soo much. The instill really have not been a painful experience.

      Since I have learned how to self-cath when I have to have a catheter inserted I ask if I can do it myself. The nurses sort of look funny when I ask them but they always let me..and I have absolutely no pain when I cath myself.
      Last edited by L. Thomas; 06-02-2007, 09:30 AM.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

      Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
      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
      Louann

      Comment


      • #4
        Thanks girls. I just can not tell you how painful it was when I was a kid and had this done. I think it was this. I remember being on a table and them telling me to watch the TV...they were looking in my bladder. Then after filling it up til I was crying cause I had to pee and it hurt, they had me turn over and pee on my side while they watched. Sort of gross but I guess I had to do it. So knowing how painful that was does not make this any easier. I am not getting one yet but know that it will come to that. I hate being in pain like I am today.



        Diagnosed with IC 3-30-2003

        Flare ups 1 time a month lasts for days.

        Comment


        • #5
          I had a series of the instills done and not one of them hurt or was uncomfortable. I would just make it clear to whoever is going to give you one about your fears and if anything hurts tell them. But by my experience it was not a big deal and I felt so much better afterwards. Instant relief of pain.

          Let us know how you do.

          Robin
          The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



          Meds:
          IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
          UC: Asacol

          Comment


          • #6
            I'm sure it was very traumatic for you at such a young age to have that done and go through that, but try to get that experience out of your mind if you can, because it won't be as bad as you remember it being. The instills aren't that bad as long as they use the pediatric catheter, so make sure you ask them to. And like everyone else said, make sure you just take a deep breath and relax. It's pretty quick and really isn't too painful. You will just smell really bad afterwards! Atleast I did with that terrible garlic odor. You may get relief or you may not, I personally didn't get much relief from the instills, but I know a lot of others do. So you'll have to decide from your own exeperience with them whether to continue having them or not. I really hope they do help you, and really, don't stress over it too much, it really won't be as bad as your anticipating or remembering. Good luck.

            Kari
            Kari

            I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

            Comment


            • #7
              DMSO has the garlic smell. Heparin, lidocaine, sodium bicarbonate instill doesn't have an unpleasant odor.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              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
              Louann

              Comment


              • #8
                Catheterization is not comfortable, but I do the home instillations of sodium bicarbonate, heparin, marcaine (rescue instillations) & they have made my life so much better~!
                I have a few minutes of discomfort & then hours to several days of relief. My days are mostly good ones now, working fulltime, wearing what I want, sleeping well & exercising. I now think of the rescue instillations as a somewhat weird way to get ready for bed and as an essential part of my IC treatment. If your office instill is to see if rescue instillations will work for you, maybe you can be set up for home treatments (catheterizing yourself is more comfortable than having someone else do it).

                When I did the DMSO treatments, that was different. They were painful, but overall they made my symptoms so much better they were worth it. I made arrangements to have them done on Friday afternoons so I could go home, take Darvocet, watch a video & rest on Saturday. I was able to go to work Mondays fine. I did those once a month for a year, but I found that the home "rescue instillations" work better for me & now I depend on those.

                I have terrible childhood memories of being strapped down & catheterized for testing. Remember, you are an adult now, you will not be thrashing & kicking, your urethra is larger, you understand the process & are making a decision for yourself in the interest of your own health. There are different types & sizes of catheters available now & more is known. It's a different situation, different context. You might want to bring a cd player with soft quiet music, or a magazine (I used to bring Guideposts because the articles are short, positive & don't require concentration), or a friend to distract you as you hold the solution after the instillation. If it burns too badly, just void it out. The main thing to remember is that as an adult, you are in charge.

                I hope that the instillations bring you relief and better quality of life--
                Kadi

                -------------------------------------------------------------
                I am not a medical authority nor do I offer medical advice. In all cases, 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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  Originally posted by kadi View Post
                  Catheterization is not comfortable, but I do the home instillations of sodium bicarbonate, heparin, marcaine (rescue instillations) & they have made my life so much better~!
                  I have a few minutes of discomfort & then hours to several days of relief. My days are mostly good ones now, working fulltime, wearing what I want, sleeping well & exercising. I now think of the rescue instillations as a somewhat weird way to get ready for bed and as an essential part of my IC treatment. If your office instill is to see if rescue instillations will work for you, maybe you can be set up for home treatments (catheterizing yourself is more comfortable than having someone else do it).
                  --
                  Did I post this? Sounds just like something I would say except I don't find it uncomfortable I agree 100%
                  Last edited by L. Thomas; 06-02-2007, 03:59 PM.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  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
                  Louann

                  Comment


                  • #10
                    I have been doing at home for years and at one point twice a day. It can hurt. There are some things to make it as my Dr. likes to say - as good as it gets. 1) have your Dr. use a pediatric lo-fric catheter. If he or she does not have any ask them to contact a local rep who would most likely give them some to try. I like a 10 french - your RN or MD will know what size this is. Also, you might try bearing down like you are going to pee. Even at home I find this helpful. Depending what you are having instilled would affect how much it hurts after the catheter is insterted. I find having a cold pack available for right after and the ride home helpful. Then at home taking a warm bath with baking soda sprinkled in the water helpful. The water should not be HOT. Also it needs to be full enough that the water line is above your waist - it realy relieves the pressure. This may sound gross but after if I'm in pain and it hurts to pee I just fill the tub and go in the water. It doees not burn at all and its easier to go.
                    2) if you use pain med or even NSAID take an hour before.
                    3) ask someone to drive you - it takes away some of the anxiety
                    4) breathe!!!! Full deep breaths. you always hurt more if you breath shallow.
                    5) let the RN/MD know your fears. If they are good they will come up with some ways to help too.
                    Good luck!!! Remember it is your choice. Sometimes if the treatment is too much to deal with it may not be the option for you! IC is so different for each of us. Each of our bodies is built different too. so, what works for one pt may not work for another.

                    Comment


                    • #11
                      Oh I get that garlic odor in my urine all the time what does that mean??? Or I mean I get it when I am in a flare.



                      Diagnosed with IC 3-30-2003

                      Flare ups 1 time a month lasts for days.

                      Comment


                      • #12
                        I don't know, I've only had the garlic odor after a DMSO treatment.

                        Kari
                        Kari

                        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                        Comment


                        • #13
                          I get that garlic odor in my urine too. does anyone know what it means?

                          Comment


                          • #14
                            I have been doing the at home instills for a few weeks now and they do help me. I use heperin,lidocaine, and saline. It is uncomfortable to a degree, but this is likely because I am so irritated in the bladder to begin with.
                            Also, it depends on who is doing it. When I was having them done in the office, I had one nurse do it and it really hurt, yet when I had a different nurse do it, it did not hurt hardly at all. My husband usually helps me do them at home. It is just easier that way for me. I feel better when I am able to lay all the way back since I have awful stomach issues and when I am scrunched up or bending foward it really hurts my stomach.
                            The only way you will know how it will be is to try it. Maybe you will get some pain relief. Good luck and I hope they work for you.
                            Jen

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