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  • #16
    The DMSO may be what is causing you to burn. The DMSO cocktail helped my IC even though I burned for a while afterwards. The benefits out weighed the discomfort. That was my own experience; it could be different for you. Your doctor should be the one to help you with health care decisions. He can isolate the ingredients in the DMSO cocktail and help you locate which one is causing your problems.

    No, I never reuse catheters without sterilizing them--per doctors orders. Discuss sterilizing techniques with your doctor.
    Liz

    Comment


    • #17
      When I was self instilling, my uro's office provided the catheters and the syringes for drawing up the heparin, as well as the syringe for instilling the combination once I mixed it.

      I use soft catheters --- I have used the straight ones, but I find the flexible much more comfortable --- it's totally a matter of individual choice. My uro's office nurse also instructed me on how to clean the catheters for re-use.

      I do think it's good to share our experiences. If there hadn't been someone on the boards to tell me their first few DMSO treatments were painful, I would not have gone on beyond the first one --- and DMSO has been my savior.

      I don't use gloves. What I do is to wash my hands thoroughly with antibacterial soap. I store my catheter supplies in such a fashion that I can unfold the wrapping without touching anything inside. I also lay out a fresh towel to receive the equipment after it's cleaned. I then wash my hands and do the procedure, clean the equipment and put in the fresh towel and fold it around it to cover completely.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #18
        yorkiegirl, I hope using the plain water will work better for you. Be sure to let us know. I have heard of a few other people who are sensitive to sodium chloride --- it's not common, but it can happen.

        Warm encouraging hugs,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #19
          I use soft catheters with a wide tipped single end (on the drainage side, not the insertion end)--different from the stiff ones that are used in hospitals and many doctors' offices. I am using a French 14 or 12. I have even dropped down to a French 10, but find it too slow for me--personal preference. The French 8 gives too much and is harder to work with, in my opinion.

          These catheters cost $2 each; and the shipment price is $5, so I get enough at one time to make the order worth while. You can file your own insurance paperwork if you get your doctor to write an order for the catheters. Policies differ on how many are covered by insurance.

          I chlorox wash the catheters and sterilize before reusing. Check with your doctor on how many times he would recommend your reusing a sterilized product. I never want to take the chance of introducing bacteria that would cause a bladder infection.
          Liz

          Comment


          • #20
            Thank you for all your responses. I am still working with my urologist and pharmacy to get comfortable with the solution and supplies.
            I will report back when I know what works for me!
            thanks IC angels! angel
            [SIZE="2"][FONT="Lucida Console"]
            My blog: http://icandpne.wordpress.com
            1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
            Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
            Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

            Comment


            • #21
              Is there anything else that I can help with?
              Liz

              Comment


              • #22
                Thank you Liz for all your help on this. I am awaiting my dr. and pharmacy to get the dosage. I received No. 10 red rubber catheters, the long ones, which work a lot better for me! 12 might be faster, and now I see why the #8 would be too small.
                I found the site of IMS which sells the lydocaine in urojet dispensers and will take a print-out to my pharmacy, since they couldn't find it. I have done so much research on all of this - it really shows that we have to be advocates for our own medical care!
                The final piece will be the heparin dosage.
                I will let you know what happens.
                Thanks everyone!
                [SIZE="2"][FONT="Lucida Console"]
                My blog: http://icandpne.wordpress.com
                1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                Comment


                • #23
                  Donna, I am also going to try your method with keeping the supplies wrapped in a clean towel for the next time. And I've been washing my hands with antibacterial soap like you said, instead of getting gloves, although my pharmacy told me they ordered them already.... well, I have plenty of time to try it both ways!
                  thank you!
                  [SIZE="2"][FONT="Lucida Console"]
                  My blog: http://icandpne.wordpress.com
                  1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                  Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                  Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                  Comment


                  • #24
                    Loriz and Brenda - thank you for sharing about your success with Elmiron instills. Please keep us updated with your success. Did it help with pain? That is my main problem, and my urethra hurts so much after Elmiron instills I wonder if it is the grainy-ness of the Elmiron.
                    Yorkie girl - let us know how it works taking the sodium bicarbonate out of your solution...!
                    [SIZE="2"][FONT="Lucida Console"]
                    My blog: http://icandpne.wordpress.com
                    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                    Comment


                    • #25
                      The lidocaine urojets come 20 to a box. Your doctors needs to know that in order to script them.
                      Liz

                      Comment


                      • #26
                        I am doing self catherization because I was retaining too much urine. I wash my hands with antibacterial soap, use baby wipes to clean the area, I use Xylocaine Gel to put on the tip of the catheter when I insert it. After the catheterization I put my basin in the sink with my catheter and wash it thoroughly with antibacerial soap on the outside and then squirt some in the inside of the catheter and run water through it. You need to rinse it off good because as you know any soap, etc. can cause irritation. I have a clean towel laid out (per Donna's instruction to lay the basin and catheter on and let it air dry and use the same catheter over again. The Xylocaine Gel is a big help I might add. Hope this helps. Susan

                        Comment


                        • #27
                          I have been doing elmiron instills for over 3 years now. I believe I was one of the first in my area. I talked to my uro about doing it since I had side effects from the oral elmiron. She contacted Dr Parsons who had already had patients doing it with GREAT results. It has totally changed my life!! My bladder capacity has increase immensely!!

                          My dr said you can re-use caths (I don't chance it) but she said wash them with soapy water, rinse and put them in the microwave for one minute to sterilize. I have to use the pediatric caths.

                          Also, a word of caution about instilling water. I sure hope it is sterile water that you get at the pharmacy. You have to have a pres for it. One time when my ins was not gonna pay for my sodium bicarb I asked my pharmacist about using plain tap water and he said "NO"! He said there are microbes in it that can mess with your bladder and chemisty. He scared me about it and I had my dr write me a pres for sterile water til I got my sodium bicarb.

                          I know everyone is different but this is the info I was given.
                          hugs
                          brianna

                          Comment


                          • #28
                            Thanks Lori I am starting the elmiron instills next week and that is good to hear
                            that you are doing well on them....I hope I am just as fortunate.
                            Thanks
                            Patti G.

                            Comment


                            • #29
                              I have read all the posts in this thread and it is amazing to me ow different it is from person to person as to what needs a RX and what doent and who uses what etc, but here is my treatment procedures.....
                              I have been doing elmiron instills for 3 years almost and it has made the MOST difference in my bladder than anything I have done )and if you read my bio Ive done evertything!!My Urologist was trained by Dr.Parsons and they belive as do I that putting the medication right where it needs to go is the best way to treat a bladder since by the time most meds make it to your bladder they are about 85% filtered out.
                              I use 3 capsules elmiron )which I grind with the back of a spoon till it is powdery, that just takes seconds and keeps the elmiron from clumping or being gritty
                              then I add 15cc of 2% injectable lidocaine (and I run the bottle under warm water before, that also helps disolve the elmoron and it makes the instill feel better when it is warm)
                              I used to put in 3cc bicarb, but it burns me post void so now I add 3ccs of sterile plain water (which is a RX in Texas)
                              I prefer a 8 french catheter with a luear tip (I didnt like the lo-fric brand, too slippery to handle and not reusable)
                              But I put the cart before the horse, the very first things I do are using sterile cotton pads and betadine I clean around my urethrea and if cotton is irritating or I am sore I put some betadine and warm sterile water in a peri bottle and wash off. Then I use Lidocaine gel on the opening and let it set while I ready my instill, so by the time i have it all mixed well and in the syringe I am numbed up and ready to cath and drain my bladder, as soon as the urine stops draining I put in the instill. A little tip for getting all the elmiron out of the cath is to have a little air in your syringe to push it thru or have a second syringe with about 2 cc of sterile water in ot and wash that thru the cath, but make sure you pinch the end of the cath before you do or you will drain out your treatment and that is really maddening!!
                              If I am having alot of pain or in a flare, I like to use the peri bottle post instill and rinse with warm water.
                              Hrer in TX you can go to any medical supply and some pharmacies and buy caths over the counter, you can also get syringes and pull needles too w/o a RX so I guess it depends on what the laws of your state are. But call around to medical supply places and check, I get urine specimine cups there too ans also sterile underpads so if I drop something during a instill it doesnt get contaminated.
                              The most important part of an instill if you do it yourself is to keep sterile, it is way too easy to get a UTI by getting a little lax in your sterile stuff. I do reuse caths and cups and syringes, I was told to wash them in Dial anti bacterial soap and hot water then let them dry on the sterile pad and put in a clean ziploc bag after. But make sure they are dry or they can grow ickies in them (my daughters medical term)
                              I kmow it sounds like alot to do, but it really only takes me about ten minutes from step one to clean up and then I get to lay down and enjoy the LACK of feeling my bladder for awhile (you who do rescue instills know what I mean!!).
                              Anyway the elmiron has healed my hunners up really well, as long as I keep doing thw instills I havent had a major bleed from them.
                              Hope this helps some of you all and made sense, I am typing with a whopping dose of morphine in me due to back surgery, so excuse the many typos please.
                              Love to all
                              Sonja
                              Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                              Support American Cancer Society Relay for Life
                              http://Relayforlife.org
                              Living life on hope and a prayer.
                              To read me and my family's story
                              http://ic-network.com/patientstories/sonja.html
                              Spinal surgery 04/06
                              Interstim implanted12/04
                              interstim removal 12/05
                              Hysterectomy 1998
                              Bladder surgeries due to hysterectomy,'98,99,00,01
                              DXx with IC w/ Hunners 1999
                              Chronic Pelvic pain
                              Chronic fatigue
                              Fibromyalgia
                              Depression/post traumatic stress syndrome
                              IBS
                              Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                              Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                              Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                              Meds:various pain meds,Soma (muscle relaxant)
                              Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                              and a few others I'm sure,depending on how good I have been on my IC diet.

                              Trying to keep a positive attitude, in a negative world.

                              Best treatment of all, Good Friends who Understand

                              Comment


                              • #30
                                Finding Supplies

                                My insurance will cover suplies (syringe and cath.) if the MD writes an Rx but I have to have the Rx sent to an in-network provider of durable supplies. I use 8fr ped. feeding tube and I have no problems.

                                I order the needles over the internet, but my durable supply company will sell them to me a their cost. If you look around you can find an internet supplier of needles for a reasonable fee.
                                ________
                                Hyde Park Residence Pattaya
                                Last edited by L. Thomas; 08-19-2011, 05:23 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

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