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  • #16
    rescue instills

    I am supposed to start my first round of instills next week,but now am a little worried.
    I've heard that instills can cause UTI's(which I normally don't get), and, my doctor uses the lido/bicarb/hep. cocktail. I have been reading that the bicarb can actually cause burning, which I have enough of already!
    My uro also does not allow patients to do instills at home though he didn't say why.

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    • #17
      BUBB1, I've been having weekly DSMO instills and they have helped significantly with the pain and I've have not had any UTI's from it, although your having a different instill I wouldn't see any reason why it should cause a UTI.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily

      Comment


      • #18
        rescue instils

        Originally posted by greeneyes View Post
        BUBB1, I've been having weekly DSMO instills and they have helped significantly with the pain and I've have not had any UTI's from it, although your having a different instill I wouldn't see any reason why it should cause a UTI.
        Thanks, that makes me feel much more confident.
        Laurie

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        • #19
          Many people have problems with drug coverage for meds. My insurance changed and I haven't had to get meds yet. I have my fingers crossed that the new policy will cover the meds.

          Scroll down the menu. There is a board Misc. treatment. You can read the section on drug cost and expenses. Maybe you can find information that will help you.
          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


          • #20
            So far, my insurance company is covering them and I've had to have eight so far a the uro's office. Unfortunately , they're only helping for a very short period of time, like a day or so before the pain, burning, stinging, urgency comes back. I had lidocaine and heparine once a week for four weeks with almost no improvement so he switched me to marcaine combined with something else that I can never remember the name of. I've had two of those now and continue to only get a day or two of relief at the most. I will continue to get at least two more of these just to give it the best chance possible of helping me. Am really getting to my wits end after almost three months of instills and bland eating. The flare just continues on on a daily basic and I'm doing everything I can to calm the bladder down. It really is crazy making and discouraging after all this time. Hard to keep hopeful when it goes on for this long...

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            • #21
              Originally posted by chhhb View Post
              So far, my insurance company is covering them and I've had to have eight so far a the uro's office. Unfortunately , they're only helping for a very short period of time, like a day or so before the pain, burning, stinging, urgency comes back. I had lidocaine and heparine once a week for four weeks with almost no improvement so he switched me to marcaine combined with something else that I can never remember the name of. ..
              I started with 3 instills a week and had to increase to daily for 3 or 4 months. Now I don't even know how often I do them. I would guess that I do one every week or 2.
              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


              • #22
                Crystal30, I use Kenolog and Lidocaine. Just started at home instills in the past 2 weeks. It's has helped me tremendously!

                Sailaway, I can't take miralax or milk of mag w/out an instant flare. I'm still trying to work it all out... literally!!! i don't know about everyone elses bladder, but mine absorbs. I had a systemic reaction to the elmiron instill? It's weird

                Flowerchild
                I'm Perfectly Imperfect and Praying for Remission

                Comment


                • #23
                  Still doing OK with Kenolog/Lidocaine

                  OK ...it's been 4 mths of instills now. I have actually gone several weeks here and there without needing it but with allergy season cranking up I fear the demon will return. I hope the Kenolog instills will keep it at bay. So far..so good. I am thankful to be able to do these at home and can do them quick and easy!
                  I'm Perfectly Imperfect and Praying for Remission

                  Comment


                  • #24
                    Allergy season does affect me. I usually do 1 instill every week or so but during allergy season it is common that I need one almost everyday. To make things worse it seems the allergy season is starting sooner and lasting longer. But the instills do continue to work. Then when allergy season is finished I go back to the normal once or twice a month.
                    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


                    • #25
                      Self-catheterization in Canada

                      Wish that was an option where I am.

                      In British Columbia, if you get instillations at the hospital the kenalog & rescue vials are paid for. But if you self-catheter, although they're fine with training you to do it, you have to pay for all the medicine vials yourself, and $hundreds/per installation.
                      So dumb, because of course it saves the hospital money in nurses time, schedulers time etc....
                      Without being able to self-catheter, I can't really apply for full-time jobs (can't go to interviews with 'two to three days a week I'm not available these hours as I need time off during clinic hours) - so costs the economy too, when lots of us can't do full-time work because of this. So dumb.

                      Is it the same in other Canadian provinces?

                      Lisa
                      ______
                      Severe IC developed fairly quickly, autumn 2010.
                      So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                      - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                      - Methadone 9 ml/day
                      - Instillations:
                      - 40ml Kenalog (steroid for inflammation) 2 x per
                      week, along with rescue cocktail of heparin,
                      lidocaine, sodium bicarbonate
                      - 20ml Uracyst, monthly @ $100/per
                      - Depo lupron injections for endometriosis, monthly @ $88/per

                      Comment


                      • #26
                        I have had 2 instills already and I find that it only aggravates the IC. I was told to be patient and complete the 8 week regime. Im not sure what else there is that I can do. Anyone else have this problem?

                        Comment


                        • #27
                          I stuck with it & improved

                          I started instillations (heparin/lidocaine/sodium bicarbonate) in March and after three or four I cancelled them because I found it aggravated pelvic discomfort rather than improving it. In May, desperate for solutions, I tried installations again (kenalog with heparin/lidocaine/sodium bicarbonate). This time a couple of people told me that it can take two to three months to see the improvement. I stuck with it this time, and after two months began to see significant improvement. I'm doing a few other treatments in pelvic region too (uracyst installations, ranitidene prescription as anti-histamine, depo-lupron for endometriosis) but I suspect that it's the main installations (2x/wk) making the difference. It took two months for them to start to work for me.
                          ______
                          Severe IC developed fairly quickly, autumn 2010.
                          So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                          - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                          - Methadone 9 ml/day
                          - Instillations:
                          - 40ml Kenalog (steroid for inflammation) 2 x per
                          week, along with rescue cocktail of heparin,
                          lidocaine, sodium bicarbonate
                          - 20ml Uracyst, monthly @ $100/per
                          - Depo lupron injections for endometriosis, monthly @ $88/per

                          Comment


                          • #28
                            My doc says that if you dOnt feel improvement by the 2nd or 3rd instill then it's time to do a cystoscopy. I've had 5 and I thought they were helping at #3&4 but no improvement with the fifth. He will only do hep,so bi carb, Marcaine. I am seeing another doc for a second opinion this Friday. She's four hours away so I'm not really sure if she can help me. I would like to keep trying the instills and wanna try different cocktails but he only does the one kind. It's been a long 2 months dealing with this
                            symptoms when in a flare:

                            I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                            *I have a fibroid on my uterus near my bladder.

                            Medication
                            100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                            Flexoril 10mg (doesn't work)
                            Hydrocodone 5/325 PRN
                            Cetalopram 40mg *severe anxiety over flare

                            Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                            My urethra are very tight.

                            currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                            I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                            find me on Facebook! Brandy Schildknecht Covington

                            Comment


                            • #29
                              Originally posted by bjcov View Post
                              My doc says that if you dOnt feel improvement by the 2nd or 3rd instill then it's time to do a cystoscopy. I've had 5 and I thought they were helping at #3&4 but no improvement with the fifth. He will only do hep,so bi carb, Marcaine. I am seeing another doc for a second opinion this Friday. She's four hours away so I'm not really sure if she can help me. I would like to keep trying the instills and wanna try different cocktails but he only does the one kind. It's been a long 2 months dealing with this

                              Please make sure you don't have some kind of pelvic floor muscle tension involved here. I found out that that was what was wrong with me, after all those instills and driving a long distance to get them, I was making things worse witht he long drived. A lot of uros, unfortunately don't know anything about this and they should! Pelvic floor muscle tention can mimic IC flare pain. When you mentioned having a tingly feeling and urethral pain, I felt that might be a red flag and wanted to mention it to you. Those muscles can pull on your pelvic area and cause that kind of pain. I went through almost twenty instills before I switched to another urogolist and she immediately referred me to a pelvic floor physical therapist. I don't know where you live but if you continue not to get any relief from instills you may want to look into it. I know who the best people are in the Orange County California area. Two months is a long time for an IC flare. It may be worth your while to look into this and have a doctor start to rule these things out. A simple pevic exam by a doctor who is experienced in this will either rule it out of show that you have some pelvic floor muscle involvement causing your pain. I've had IC and didn't know anything about this at all until a year ago I got what I thought was a flare and it didnt' go away. These are all just suggestions. I'm not a doctor and am sharing what happened to me. I would have gotten better sooner had I known about it and gotten the right kind of treatment. God bless.

                              Comment


                              • #30
                                I agree with you. Unfortunately, there is only one PT that does PFD in my area. And I doubt she is familiar with IC. I've been on a waiting list to see her for a month. It's ridiculous! I am seeing a uro in the Seattle area on Friday. It's four hours away but I'm gonna inquire about PT there. It the bad thing about living in a smaller town. We just don't get alot of options here.
                                symptoms when in a flare:

                                I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                                *I have a fibroid on my uterus near my bladder.

                                Medication
                                100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                                Flexoril 10mg (doesn't work)
                                Hydrocodone 5/325 PRN
                                Cetalopram 40mg *severe anxiety over flare

                                Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                                My urethra are very tight.

                                currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                                I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                                find me on Facebook! Brandy Schildknecht Covington

                                Comment

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