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supra-pubic catheters aren't that great like they made them out to be...

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    supra-pubic catheters aren't that great like they made them out to be...

    I have had a suprapubic catheter for 9 weeks now. It comes out just below my belly button, and just above my pubic hair starts. The tube they put in is GIANT. I was asleep for the first one, but after that I was awake and in need of pain meds. At night, I can pee about 1.5 Liters of fluid.

    My problem with the cath is that it is bulky, you can see it under all of my clothes, and it is VERY painful. I wear a leg bag during the day if I am going out for an appointment, and just the regular set up at home if no appointments are needed.

    I am going through tape like a mad woman to tray to keep pressure off of the cath. I still have to wear adult depends because it leaks around the cuff in the urethra
    and I can't tell you how many times I have woken up with wet pants on. NASTY.

    This pain has to subside eventually, or I am going to take it out. Probably. I will think about that really hard first.

    Thanks for listening
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)

    I also have a suprapubic catheter, and there isAbsolutely no pain involved. The leaking that you described has not happened to me at all. Even when they change my catheter tubing I did not experience pain, I do notice a slight discomfort. I have an extremely high tolerance for all pain, maybe that explains it, I do not know. All I can say is that I hope things improve for you.
    MS World
    PPMS DX 2001



      Have you ruled out straight cathing through the supra public opening? That is what my urologist told me they do. He also said they sew up the opening to the urethra so there will be no more leakage.

      But it's good you've kept all your options open.