Announcement

Collapse
No announcement yet.

Self-caterization

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Self-caterization

    1. Self-Caterization through the penis is not an available option since I have a very narrow passageway and low pain thresh-hold.

    2. Side bag is not an issue since I would be at risk of rupture or disconnection in association with the type of work I perform.

    3. Self-caterization through the bellybutton seems to be an alternative but know no one who has had it done to discuss the pro's and con's.

    I currently hold 8 oz of liquid at a shot with a small capacity bladder. My docotr said I need an Augmentation Cyctoplasty but I have to learn some type of caterization before he will perform the surgery. Any help would be deeply appreciated from anyone who has went through this type of proceedure.

    [email protected]
    Tags: None
  • #2
    Welcome to the ICN. I'm glad you've found us.
    Have you been diagnosed with IC? Has your dr offered you any treatments besides surgery? Is your Dr experienced with IC? I'd recommend getting a second opinion.
    Please check out the ICN handbook. There are many many treatments for IC and surgery should be considered only as a last resort.
    take care,
    Melanie
    Melanie
    __

    Comment

    • #3
      Yes Melanie I have had 2 opinions. So I am to believe these are the choices left before me. Although I am fully aware that these choices are one's that I must make for life.
      Yes., Both of these doctor's have worked closely with IC Clients and have a good track record. But that does little in helping me make my decision since they are not the one's having to go through all of this. In 1991 I had the Uro study done and was at 350cc capacity. Now in 2000 I am at a mere 15 to 20cc capacity. 35 to 40cc if I sleep straight through the night. Xray's scopes and other tests have shown that my bladder is constanly shrinking. a Hydo test & scope showed that it could not be blown up any more than it currently is. That's why surgery is needed. Is there anyone out there to your knowledge who has been through the options I mentioned in my post? I really need help here. And to say I'm scared is an understatement. At 41 I should not have to be going through all of this.

      [email protected]

      Comment

      • #4
        I suggest that you call Jill and talk to her in person. She has dealt with Men and IC and also lead a support group for men with urinary problems. If anyone can help you right now, I believe whole heartly that Jill is the person that you need to speak to.

        Her number is 708-538-9442....If you get the answering machine, just leave a message and she will call you back...

        Diane
        ICN Asst. Mgr.

        Comment

        • #5
          Hi Diane,
          The number you gave me is no longer in service. No forewarding number is available at this time., So my post still stands as is for now. But thanks anyway.

          Donald

          Comment

          • #6
            Donald,

            I have had this problem for many years, what have they tried with you? DMSO does work for me, It seems to be finally helping with this flare up, IC had been in remission for three years, but this pain was the worst I have ever experienced. Have you tried diet? Also there is a book by Vicki Ratner who specializes in IC, It is very good. It talks about treatments, diet,etc. I cannot remember the name of the book off of the top of my head, but she is the author. Lots of distilled purified water, no artificial sweeteners, try baking soda a teaspoon with water, tums, prelief before meals. This book helped me alot, and I did not have any problems for 3 years. Get another opinion if possible, don't have surgery unless its a last resort. This IC does go into remission, many times, and from the research that I have done, even with surgery you can still have referred pain, similar to what an amputee experiences. Hang in there, read as much as you can and take care of yourself.

            Ruthie

            Comment

            • #7
              Donald, I had the augmentation cystoplasty done and it did not work. The IC spread to the augmented bladder. They ended up having to take my bladder out. I currently have a continent ostomy that I catheterize 4-6 times a day. Please feel free to email me with any questions at [email protected] I know a guy who also had it done for IC.

              Comment

              • #8
                The phone number for Jill is still good. However, she lives in California and has been involved in the "rolling blackouts" caused by a power shortage. You could send her an email asking her to call you (link is at the top of this page) or try calling again.

                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

                • #9
                  The number for Jill listed on this site is
                  707-538-9442. Could someone confirm whether the correct number begins with 707 or 708?

                  Comment

                  • #10
                    The number listed is correct.

                    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

                    Previous template Next
                    Working...
                    X