Announcement

Collapse
No announcement yet.

If you don't see many posts here....

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Originally posted by jmill8 View Post
    Finally resorted to urethra catheter for IC after various other treatments, however, scarring from proctectomy caused considerable pain after 1 - 2 weeks. On July 27th I opted for Supra Pubic cath, that has proved to be painful as well. Cath entry point remains red and angry with movement causing considerable pain. If anyone on site has had experience with Super Pubic cath, please relate experience as I am at wits end after 11 years dealing with various IC treatments.
    Are you getting some rest with the supra-pubic? If you're putting strain on the muscles around it, that might be irritating. I suggest you talk with your doctor to be sure you don't have a problem working.

    Sending healing wishes,
    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


    • #32
      As long as I don't move around aggressively, pain is bearable. Can't sleep on sides or stomach due pain, get some good sleep on back but difficult to remain on back all night. Major problem is SPC entry point being red and angry. Uro keeps referring to internal pain from cath poking bladder wall but I know it is external. Have appointment for SPC cath change on 27th, will be interesting to see how that goes. Haven't received any response re anyone on site having experience with SPC, assume it is not a widely used option.

      Comment


      • #33
        73 YOM diagnosed with IC and Prostate cancer in '09. Had proctectomy in '11, could not do chemo due IC. Have tried all IC treatments available to no avail. Last option was urethra cath, that didn't work due scar tissue from prostate surgery causing pain in urethra. Now, as of 7/27/20, am using Supra Pubic Cath. It has been a trial with cath insertion point being very red and painful. Uro says this will abate at some point and if not only option is to remove bladder, which, I will not do. Cath resolves bladder IC pain along with not having to know where every bathroom is in town. I am hoping pain will subside and this will suffice to ease IC pain in the long term. It is not, to say the least, hearting to accept wearing cath for rest of life but better than constant pain of IC. Hope this info helps some.

        Comment


        • #34
          73 YOM diagnosed with IC and Prostate cancer in '09. Had proctectomy in '11, could not do chemo due IC. Have tried all IC treatments available to no avail. Last option was urethra cath, that didn't work due scar tissue from prostate surgery causing pain in urethra. Now, as of 7/27/20, am using Supra Pubic Cath. It has been a trial with cath insertion point being very red and painful. Uro says this will abate at some point and if not only option is to remove bladder, which, I will not do. Cath resolves bladder IC pain along with not having to know where every bathroom is in town. I am hoping pain will subside and this will suffice to ease IC pain in the long term. It is not, to say the least, hearting to accept wearing cath for rest of life but better than constant pain of IC. Hope this info helps some.

          Comment


          • #35
            I'm so sorry you're having such a difficult time. Fortunately I was able to have chemotherapy in spite of my IC --- is your cancer in remission? You might talk with your doctor about the possibility of using lidocaine or marcaine around the catheter insertion site to help ease the discomfort.

            Sending warm 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

            Working...
            X