I have a permit cathiter anyone eles? Having a super pubic next month ( i Scard) — Scope | Disability forum
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I have a permit cathiter anyone eles? Having a super pubic next month ( i Scard)

Piglets12 Member Posts: 17 Connected
I had a late dinos of autism and other issues around this in my late teens and 20s before I knew I had autism. I was hospitalised . Most of my life I was a bad wetter. After being abused sexual as a child I landed up being raped and resulted in a baby at 16. I was then unable to control my bladder. In a mental hospital i was allowed to see a urologist. They found I had a prolaps and a week bladder that spasams during tests. But the mental hospital refused treatment for me. Years passed and I 're visited same consultent who offered to sort prolaps and tighten me up bank and frount. After all this I started to go into retention. I learned to self cathertise. But having a hernia come out when I bent over to do it I have had a 12 week one in now since 2012. And just been aproved for a supper pubic. It's messed me up bad so I can not pee at all without it. So next month it Goes in my tum. I nervous has I also have autism the issues I get now are real bad spasams and painful and lots of infections it can come out while with the balloon and once it burst. So anyone here got a super pubic is there less issues with it does it stay in place for the full 12 weeks before change and less spasams and infections. Because I am worried. And information would be use full.I never talked to anyone who's had one before! Thanks


  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 Pioneering
    Hi @Piglets12,

    I'm sorry to hear about your experience. NSPCC have some useful information and support for adults abused as children which you may find helpful.

    We have a few members of our community who have a suprapubic catheter. @tinakath01, @MSmum99, @flowergirl1965, @charlie2017 and @Lu83, would you like to share your experiences? 
  • LittleGizmo86
    LittleGizmo86 Member Posts: 79 Courageous
    Hi @Piglets12

    I am sorry to hear your story :(

    When i was able to work i supported 2 woman who moved over to super pubic catheters and they sweat it is the best thing they ever did. Before they got them they were forever coming out and having to go to hospital to put them back in, forever getting infections and always having issues when sleeping with the over leg/under leg dilema! All of that has gone! they come out just around the sort of knicker line slightly to one side (the belly roll line as i like to call it). both of them have forgotten they are there amd wish they did it sooner!

    I was told i needed one (lucky i didnt) and my first words were 'only if it is super pubic).

    Obviously the initial fitting is a bit more invasive that a regual one but once in it is miles better.

    You will be right :)
  • Lu83
    Lu83 Member Posts: 3 Listener

    I'm sorry for all that you have been through. I hope you are getting support with that either in therapy or talking people.

    I can understand the anxiety of this new point in your life.

    Try to talk about what is scaring you the most.
    Always write down your thoughts and questions so you have all the information and knowledge to put you at ease.

    Make sure you, understand everything. The do's and don't and contact details.

    I'll be honest with you and say, that even though I've had SPC for 8-9 years, I get anxious when the nurse comes to change it. And I believe because of my mental panic, I become more sensitive. So it's best to not be fully scared. Because you'll be jumpy even when nothing is being done.

    On the day, take something to do to occupy your mind off things.

    As @LittleGizmo86 said, the initial procedure is basically invasive.
    I had it done under local anesthesia or just numbing the area where the hole will be.
    If you feel any discomfort tell the doctor.

    My SPC I have for 4 weeks, as I have had other bladder issues before.
    That's why I have the district nurse come do it. (Even though I know how).

    The lubricant that is used will numb the area for a bit. And it only takes the nurse 10 mins and the rest filling paperwork and seeing how you are.

    Infections I've been told will happen whenever there's something foreign is there in the body.
    So drinking plenty of fluids will help with infections and UTI. And clean hygiene of course.

    There's this thing called a StatLock device, which I use to stabilise the catheter from moving around. You just stick it on your leg or stomach in my case. And place the catheter line there.

    As for spasms, have the doctors not given you any medication before?

    If you need anything else feel free to pm me.

    I hope you the best and good luck :)

  • Piglets12
    Piglets12 Member Posts: 17 Connected
    They giving me mine under a genral anaesthetic as I have autism. I flinch when they doing the other kind up! I don't have no one to talk tojust district nurses and I asume I go back for check up I will ask questions. Thanks I no I not alone 
  • Piglets12
    Piglets12 Member Posts: 17 Connected
    Hi had my super pubic done now. I getting a bread deal of spasams. On and of. I only on 2mg diazepam and 2 buscopan a day. I heard some take the buscapan up to 4 comes a day along with another spasam pill.

    Don't understand why GP not giving me stuff at right does to help me I badly suffering. I'm of to sit and wait at doctors in the morning and hoping they sort me out properly had to call urology who advised me of a few tablets to name to the doctor. To go with the buscapan. Inbwtween spasams I fine. 

    I done no how to use this site but if some of you who bave superpubic cathiter on here please comment as I would like to talk to you how you manage or don't.
  • Piglets12
    Piglets12 Member Posts: 17 Connected
    This belly  bag is the best bag and has holds a lot no night bags needef
  • Lu83
    Lu83 Member Posts: 3 Listener
    Personally I haven't been on diazepam or buscopan.
    I take something called Solifenacin. I started at the lowest which was 5mg and now on 10mg.
    And because I've had my catheter for so long and getting no better with the spasms, I get bladder Botox.
    Basically Botox injections are done inside the bladder walls. Its rather uncomfortable and painful as it's like you being pinched. But it helped with a broad range of issues I had too.

    Could your spasms be caused by a urine infection?

    It's going to be frustrating dealing with a catheter.
    Your body isn't used to this new thing, so you'll feel all kinds of things.

    Doctor will only prescribe a certain amount or dose to see if that does the job. So that your body gets used to the lowest or if that doesn't help, they'll be able to do the next.

    Everyone has different pain limits and other health problems. So Doctors have to see which medication would work with the ones you take.

    Do you take your medication all at the same time?
    If so, how about you consider taking them at different times. See which one does a better job? Just when you feel the spasms coming on take a dose. Just taking them an hour between could do the trick.

    Always ask your doctor what is the best way to be taking your medication. And don't stop in the middle of a prescription because you feel better.

    Stay strong physically and mentally.
    All the best.

  • Piglets12
    Piglets12 Member Posts: 17 Connected
    Thanks for the advise! I going back to GP tomorrow as the busapan is only 2 times a day I am asking if i can increse to 3 or 4 times a day I deffently don't want no extra diazepam as it is one if any higher does I would not beable to drive so if buscapan don't work then I will see off there's a different poll non drowsy and go from there it's between 11am onwards trouble starts as pain intence. And only if i wake in the night but might they short lived but say interferes with activities. At mo all meds morning a d night. I could manage the mild spasams as the very short and not intence after meds.  

    But that evening does is a long way off! In morning I cope till 11am do neex between something. 

    Will chat to my GP no infection in water that's been checked by district nurse keeping eye on the hole! Had antiboties for infection around cathiter in the belly. And now healing great! ☺

    Tomorrow another day!


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