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  • #31
    I think 2 visits will be enough. The third visit was more or less an evaluation of how the instills were working and how to draw the meds from the vial into the syringe. I know you won't have problems if you have a nurse a home that you can ask questions about mixing the instills. Learning how to self-cath is basically practice. You won't believe how simple it is after a month. I can't tell you how scared I was. It took me more than a week thinking about it before I decided to try it. I knew that the instills were working but I also knew how incredibly expensive it would be if I had to drive 180 miles 3 time a week. PM me if you have questions I will be glad to help. It have tried to make the instructions as clear as I can but if you have any questions be sure and ask.
    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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    • #32
      I learned how to self instill in one visit. My uro's nurse was a good teacher and told me if I had questions I should call.

      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

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      • #33
        Great post . Well written. :woohoo:
        Hugs Sandra
        "Never Give Up."

        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

        My Photobucket Link:
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        • #34
          Question for L. Thomas

          L.

          I have a few questions for you. I think I've had IC since May when I got a really bad case of pyelonephritis, a kidney infection caused by a urinary tract infection. I've had frequency for years (started also when I got my first UTI) but the urethra burning sensation, constant full bladder, and feeling like I didn't finish definitely started after I was released from the hospital this May. My doctor has diagnosed me as having overactive bladder but I'm going to get a second opinion. I am convinced I have IC and that it is at the early stages (i've never really experienced pain). Anyhow, I have a few questions for you because you say that your treatment only consists of home instillations. What about diet? Do you follow the IC diet as well? What about in other aspects of your life? How does IC interfere, if any, with social gatherings and intimacy (you don't have to answer that one if you don't feel comfortable)? Your story is just so encouraging, I just want to believe that I can also be another IC success story.

          Thank you,
          Claudia

          Comment


          • #35
            I do not have food sensitivities. So I don’t have to worry about the diet. I had to have allergy testing before total knee replacement and when the allergist found out I had IC he did all the test for food sensitivities and they were all negative. I thought that was sensitive of him. He was familiar with IC and thought it would be helpful to me. He knew my insurance would cover it because I was having all the metal allergy testing. Normally insurance won’t cover the test until you have had “normal” treatment for allergies and it doesn’t work.

            Before I started instills, it was a problem. I felt like I had to go to the bathroom all the time. I never seemed to empty (THAT IS BECAUSE I WASN’T). I really timed myself and went every 30 mins. If I didn’t I would pee all over myself. I did pee when I had sex with my husband. It did bother me but didn’t seem to bother him. He never complained.

            Originally I was treated for OAB but all the meds did was slow my urine to a dribble and did nothing for urge or frequency. My urogynecologist diagnosis by using a “bother scale”. I had to have urodynamics testing for a totally unrelated condition 2 years after I began treatment and it confirmed IC. My urogyne says that IC is progressive but effective treatment can arrest the progress in most cases. Now have absolutely no interference with anything. I do treatments the night before I go on a trip or when I know I won’t be able to get to a bathroom easily. Other than that I just watch for my symptoms (in signature) and when they are bothersome I do treatment. Sometimes that's everyday, sometimes it's 1 time in 2 weeks, but most of the time it is 2-3 times a week. It takes me longer to mix the meds than do the instillation.

            I don’t know where you live but I would check around on the site and try to find someone in your area that has found a good MD. Most MD's don’t know enough about IC to associate it with mild symptoms. I live in TN and I drive about 90 miles to my urogyne.

            If you are not relieved from your symptoms I would keep trying to find someone that could help.
            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


            • #36
              I went for my 6 month follow up this week. There has been no progression of my IC. It appears to be arrested even though not in remission. So I guess you would say I am better since I am not worse. I am to continue instills PRN.

              I talked with him about IC and allergies. He said there was a preponderance of research that indicated a definite connection to IC and allergies. I have IC flares in September-October and March-April. I have had the total battery testing for allergies and I have very specific allergies.

              We talked about the histamine release and the reaction of mass cells. I have decided to talk with my allergist about the way allergy shots work. If they eliminate the histamine response I think I will try the shots. The way I figure it, the least I have to lose is aggravation of seasonal allergies and the most is reduction of IC flares
              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


              • #37
                From Knoxville Tn

                Nice to read of your success! My name is Debbie and i see a Urologist in Knoxville . He is great ! I was diagnosed in 2007 and for most of the years have been remission . Just flares here and there. I do home instills also. For some odd reason i am in a flare this week and am on my 7th day of instills. I know it will get better.Im not sure what caused my flares but i am practicing acceptance and moving on.........
                I do Elmiron in my instills. Is that part of your instill? Nice to meet you and read about your story.
                Happy that all has worked out for you!
                I see Dr Jeffrey Dell and i am very pleased being under his care.
                DEB

                Comment


                • #38
                  You won't find an MD any better. I have been seeing Dell since 2004. I live in Sparta, TN so I have to drive about 90 miles to see him..but I would drive 900..that is how good I think he is. I did Elmiron in the instill when there was a shortage in heparin. I didn't find Elmiron helpful in controlling my symptoms. I basically had to do instills daily. I was soooo happy when heparin was available again.
                  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


                  • #39
                    I agree with you 100% about Dr. Dell. We have been blessed! I read so many blogs and have talked to so many people that cannot find a Doctor that understands IC.
                    I am feeling much better today . I started a flare Feb 1, 2010 . It lasted about 8 days . I was diagnosed in 2007 and stayed away from coffee and worked the IC diet for about 2 years. Then i started eating and drinking whatever i wanted and for about 9 months i was in remission and havent had to do an instill all that time. I was on no meds period. This week i started back. I mix Heparin, Sodium Bicarb , Elmiron and Lidacaine in my instills. I just started back on Enablex and i believe i will make it through this! YEA!!! I was starting to worry for a while there! LOL
                    After a week of instills i am turning the corner.
                    Do you have any idea how your IC might have started? What might have caused it?
                    I started in 2007 doing Elmiron by mouth for 6 months and within 3 months i had no pain but i was one of the unfortunate ones that started loosing my hair. It was right after that i started instill training at Dr. Dells. I have recently had a problem drinking coffee. What kind of coffee do you drink? Its nice to read your posts . It was nice to hear that you reuse your catheters. This can get quite expensive! Have a great day!One hundred cheers to DR. DELL!
                    DEB
                    Have a great day

                    Comment


                    • #40
                      Hi again!
                      Can you share with me the type of catheters you do use.
                      DEB

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