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  • effectiveness of instills

    Has any gotten instills before and had no relief and then gotten them again and got relief? I had instills done before and they would help for a couple of days then they wouldn't help anymore. I'm wondering if I should try another round of them (I did it 2x a week for 6 weeks then 1x a week for 6 weeks). I see my urologist next week and she said this could be an option. When I did get them done I had urethral spasms when inserting the catheter! SO PAINFUL!

    My dr also had cath sent to my house from a medical supply company so I can self cath if I can't pee.. The lady who does my PT said this is a bad habit to do because it lets the bladder be lazy. She said it won't work right if you self cath at home.
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

  • #2
    I do home instills and at times with a really bad flare I may not get the same amount of relief. Maybe you could try a different combo of meds this time and see if that makes a difference. On the spasms issue the best thing I can recommend is asking that they use the smallest catheter possible. Many of us use an 8 fr pediatric feeding tube and they work wonderfully, my previous urogyne used them.

    Maybe you could speek to your Dr about your PT's concern. If you are experiencing a lot of retention you might want to ask your Dr if it could be caused by one of your meds.

    "What won't work right if you self cath at home"? Do you know what she meant by that?
    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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    • #3
      Do you know what is in the instillations? There are different combinations being used. Some ICers are really helped by doing them --- and many are doing them at home.

      Definitely talk with your doctor about your PT's comment. I do know there are people who self cath to do instillations more than once a day and don't have the problem she mentioned, but your doctor is your best information resource.

      Sending warm healing thoughts,
      Donna
      Stay safe


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      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.

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      [3MG]

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      • #4
        I believe before they used heprin, lidocaine and sodium bicarbonate but I'm not 100% sure. I think my PT meant that when you use a catheter it makes the muscles of the bladder weaker and makes it harder to go normally when your not using a catheter.

        Also has anyone had problem self cathing when their vulvodynia is acting up. When I'm having a flare my vulva gets all inflammed, red, and painful and it makes it hard to get the cath in.
        Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

        Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

        Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

        Comment


        • #5
          I thought that is what it meant, just wasn't sure "what" might not work right. LOL Some of us do use different medications, like I use marcaine (like lido but to me works better) and I don't have to use sodium bi carb which gave me a lot of burning. I did find the the longer I did the instills the more they seemed to help. Honestly for me, instills have never helped longer than 8 hours at the most. I do them at home daily and find that they help me a lot. Once you get used to doing them by yourself it takes very little time and to me it is well worth it. You might ask if you can try them at home by yourself.
          Donna makes a good point that many of us use catheters daily and don't have problems. How often do you have retention issues?
          Also on the urethral spasm issue there is a thing called a uro jet that is lidocaine that they insert into your urethra prior to the instill causing it to be numb. That might be an option you could ask your Dr about.
          I hope this answers some of your questions and gives you some info to discuss with your Dr.
          Sandra
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            Originally posted by sailawaygrl View Post
            I thought that is what it meant, just wasn't sure "what" might not work right. LOL Some of us do use different medications, like I use marcaine (like lido but to me works better) and I don't have to use sodium bi carb which gave me a lot of burning. I did find the the longer I did the instills the more they seemed to help. Honestly for me, instills have never helped longer than 8 hours at the most. I do them at home daily and find that they help me a lot. Once you get used to doing them by yourself it takes very little time and to me it is well worth it. You might ask if you can try them at home by yourself.
            Donna makes a good point that many of us use catheters daily and don't have problems. How often do you have retention issues?
            Also on the urethral spasm issue there is a thing called a uro jet that is lidocaine that they insert into your urethra prior to the instill causing it to be numb. That might be an option you could ask your Dr about.
            I hope this answers some of your questions and gives you some info to discuss with your Dr.
            Sandra

            I have only had retention issues the one time. They have used lidocain to numb me before and it helps somewhat but is still painful. When I got my instills I had to hold the fluid in for as long as I could which was usually 1-3 hours. I might try doing my own home instills to see if it will help.
            Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

            Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

            Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

            Comment


            • #7
              Instills are not the answer the cure for IC or the only treatment that is successful for everyone. Don't think that you HAVE to do the instills. You will have to decide if the pain you are having with instills is worth the relief you get from them.

              If you do decide on home instills don't hesitate to contact me for hints on the procedure. I have been doing then a Long time.
              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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              • #8
                When i was having the instills done at the urologists - I had it done first once a week and then later once every two weeks... They had to use the smallest catheter they had there, and more often then not it took about 5 tries to get it in the urethra because of how tense I always am.

                However the medication never burned, and I could hold it for hours on end. However I did notice that usually the day or two after having an instill I would have to urinate more often then usual..

                To me they were very effective... As for what was in them - I was just told it was a elmiron cocktail..
                Diagnosed with IC when I was 14 (in 2003)
                Diagnosed with IBS when I was 19 (in 2008)
                -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
                -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
                -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
                -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
                -Did instills weekly for over a year (after that I got chronic uti's)
                -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
                -Medications that I'm taking right now that help with IC symptoms:
                -hydroxyzine hcl 25mg
                -amitriptyline hcl 35mg
                -Cyclosporine (unmodified) 400mg (dosage subject to change)
                Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

                -Brandy

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