[Blake]

I have been having more bladder spasams and been thinking about getting a super pubic. I know two people who have one and they both say it works well for them. My main thought is I don't like the idea of being atttached to something. I would like to hear if there are many down sides.

This post has been edited by Blake: 28 September 2009 - 11:22 PM

[kiwiquad]

I was fitted with a supra pubic cath 3months after SI, so I know nothing different. There are clearly numerous downsides too being attached to a tube with a bag continuously filling & needing emptying. (less of a hasstle for you, being at a T level however)
UTI's, cath site ooze, pain if pulled. (if you have sensation) numerous AD bouts attributed to, & ranging from air bubbles in the tube, to cath changes & bladder washouts. Then there's the issue of it 'hang'n around' during sex..I'll leave that for you to image.
Have you tried Oxybutynin or ditropan (sp) for the spasms? I'd personally explore your choices/options to eliminate any symptoms before taking such a drastic step.
As you've probably established by now, I hate my SP, always have & always will. I hope someone can give you some positives apart from staying dry, which isn't always 100% guaranteed either.
Good luck.

This post has been edited by kiwigurl: 29 September 2009 - 04:31 AM

[Jax]

Blake, on Sep 28 2009, 06:19 PM, said:

I have been having more bladder spasams and been thinking about getting a super pubic. I know two people who have one and they both say it works well for them. My main thought is I don't like the idea of being atttached to something. I would like to hear if there are many down sides.

If your problem is just the spasms, then talk to the uro about meds. After my AUS install, the uro put me on Vesicare because the spasms hurt. There are several members here with SPCs, and I'm not one of them, so can't really help with that part, but I can say that I don't see the advantage to having one if you have good hand function.

[Scribbler]

Blake, on Sep 29 2009, 12:19 AM, said:

I have been having more bladder spasams and been thinking about getting a super pubic. I know two people who have one and they both say it works well for them. My main thought is I don't like the idea of being atttached to something. I would like to hear if there are many down sides.

After 45 years just using a sheath and leg bag I was advised to have a Supra Pubic fitted. I was reluctant but spoke to others who told me there's were fine. I had mine fitted 4 years ago but wish I hadn't. I still get urethral leakage; up to 500mgs during the night, so I've ended up with 2 leg bags instead of one.

I could go back in hospital and have an operation, but I don't want to; I'll just cope as I am. This is just my experience, but everyone is different; what works for one doesn't always work for another.

Good luck

[dangerousdave]

I too had problems with my bladder, spasam and never fully emptying.
Oxybutonol was a drug that started migrain attacks for me.
My urologist at Stanmore hospital recomende and proceeded with a CLAM operation.
This is where the bladder is cut open and a length of your bowl inserted. The idea being to sever all nerves around the bladder, so its in a relaxed state.
I now use SIC and the downside is, never knowing when the bladder is full, so you SIC to a timtable and or every 2 pints of beer, the bowl tissue still performs it's natural function of excreting a mucus, so your urine always looks a bit cloudy.
You still run the risk of bladder infections.
The benefits of not being connected to tubes and bags is...............undescribable!
But you alo learn how nessesary disabled loos are.

[Blake]

I have tired both Oxybutynin and Ditropan. I am on Ditropan now but it's not helping like it use to. It can just be so embarrasing to be the 13 year old who pisses himself.

I've been able to deal but last week wile my girlfriend was sitting on my lap and sure enough I pissed on her. I wantrd to dig a hole and roll in. She's great just laughed it off and said nothing goes better with a Burberry skirt then a little pee.

I have to find something that works better.

This post has been edited by Blake: 30 September 2009 - 11:09 PM

[aggzy]

Scribbler, on Sep 29 2009, 04:40 PM, said:

Blake, on Sep 29 2009, 12:19 AM, said:

I have been having more bladder spasams and been thinking about getting a super pubic. I know two people who have one and they both say it works well for them. My main thought is I don't like the idea of being atttached to something. I would like to hear if there are many down sides.

After 45 years just using a sheath and leg bag I was advised to have a Supra Pubic fitted. I was reluctant but spoke to others who told me there's were fine. I had mine fitted 4 years ago but wish I hadn't. I still get urethral leakage; up to 500mgs during the night, so I've ended up with 2 leg bags instead of one.

I could go back in hospital and have an operation, but I don't want to; I'll just cope as I am. This is just my experience, but everyone is different; what works for one doesn't always work for another.

Good luck

hey if your still having leakage something is wrong maybe investigate botox in your bladder to stop it spasming or a bigger cath

Ag's

Scribbler, on Sep 29 2009, 04:40 PM, said:

Blake, on Sep 29 2009, 12:19 AM, said:

I have been having more bladder spasams and been thinking about getting a super pubic. I know two people who have one and they both say it works well for them. My main thought is I don't like the idea of being atttached to something. I would like to hear if there are many down sides.

After 45 years just using a sheath and leg bag I was advised to have a Supra Pubic fitted. I was reluctant but spoke to others who told me there's were fine. I had mine fitted 4 years ago but wish I hadn't. I still get urethral leakage; up to 500mgs during the night, so I've ended up with 2 leg bags instead of one.

I could go back in hospital and have an operation, but I don't want to; I'll just cope as I am. This is just my experience, but everyone is different; what works for one doesn't always work for another.

Good luck

hey if your still having leakage something is wrong maybe investigate botox in your bladder to stop it spasming or a bigger cath

Ag's