[cbwheel]

Hi,
This is my first time here! Im hoping I can get some guidance. I am a 39 year old male and have been a t12-L1 para for almost 25 years now. During that time I was always an intermittent cather. Ive reached a point in life where I just dont want to deal with it anymore. Ive always had leakage issues and infection issues. When I was young, I could stay dry for long periods, but it meant severely limiting my fluid intake. This led to other problems with chronic constipation. Ive tried a foley urethral for about 10 months now. I love the freedom. I can drink whatever I want whenever I want with no worries about leakage. Ive had no infections. I also love to drink alot (no alcohol), so its terrific. However, the problem is that I cant have sex with the foley. Im in a serious relationship and want to have sex. Its a natural part of life. Im thinking about getting a suprapubic. My doctor tells me it will free me up for sexual activity. I have four questions about it.
1. Does having a suprapubic ensure that you wont leak out of your penis?
2. Is there any risk for cancer with a suprapubic? Any long term users out there?
3. How do you keep your bladder from shrinking up? Medications?
4. Which is better, continuous drainage or a flip flow valve, on can you alternate on that?
Thanks!

[Scribbler]

Hi cbwheel,

I can answer your first question from personal experience but you must remember everyone is different.

I've been injured over 50 years and for most of that time just used a sheath and leg bag. I can feel all over so knew when I wanted to pee; it was almost like an AB person.

I could remove my sheath for sex and have no leakage for ages.

Eventually my bladder lost the ability to empty, so the Dr's suggested a Suprapubic, which I've had for about 3 years. I had leakage from the penis right from the start, but they told me it would settle down. Its actually gotten worse, so I have to wear a sheath and leg bag as well as my SPC and leg bag.

My leakage is worse at night, sometimes as much as 500mls, so as well as my suprapubic catheter, I always have to wear a sheath and another bag both day and night.

Speaking personally, its the worse thing I've had done; I wish I'd been given another option.

I'm sure there are people out there who are happy with their SPC and have no leakage problems, but as each person is different there's no way of predicting how well you'll do.

I'm sorry if this post is a bit negative; I'm just telling you what I've experienced.

Good luck with whatever you decide.

Mike

[CR_L1]

Hi cbwheel,
You can use a flipflow with an indwelling or SP cath to stop shrinkage of the bladder, but I was lead to believe the use of valves was for short term only.
My bladder is the size of a walnut now but does not seem to cause me any problems.
Do you change your own indwelling, I do & just take it out for sex & put a fresh one in after.
All the best
CR

[voodoo]

Hi cbwheels

I've had a spc for about 8 years now, 33 year old t12, and its one of the best things I've had done, when I was first injured I started on isc but it didnt work for me so went on to sheaths, that was fine for 2-3 years with the odd accident of the sheath blowing off etc then my skin decided it didn't like the sheathes and they just wouldn't stay on.
Started using a indwelling cath which was great, so much less worry about leakage and easy to look after yourself, but the sex thing is a bit akward especially with a new partner, knowing that I was going to stay with some kind of cath I decided to go for a super pubic, had it done at my spinal unit, one night stay so no biggie (i've heard of people being in and out in the same day)

once I had it done I was put on a drug to stop leaking (think it was oxybutin but dont quote me on that) the doc said that i might not need it after a while so after 2 weeks i stopped taking it as it made my mouth dry and i have been fine ever since, the only time i've had a slight leak is when i had a bad uti but it was only when i was lying down, the only other time i've leaked is when i kinked the tube for the leg bag gettin in the car.

I've had the odd uti but that was probs more down to me not drinking enough, its easy to manage and change yourself, the sp site isnt to bad to live with, yes there is a tube coming out of you, but once you are used to it you dont even notice it and it can be covered with a dressing if wanted.

Never heard if there are any increased risks of cancer etc with using a spc, the hospital never mentioned it either.

I think the only way to stop your bladder from shrinking up is to use a valve on the cath, but that will increase your chance of leaking i would think, i use constantly draining and have no probs, my bladder is small now, (i've seen it on an ultrasound) but as long as its draining should cause no probs.

Obviously your spinal unit or doctor will be able to advise you better and it's not for everyone, all you can do is weigh up the pros and cons and see if it would benifit you.

Also its not permanent, if you dont get on with it, take it out and go back to another method.

If you have ant other questions just shout.

[fastwheels]

by having a SPC it will make your life easer you still get some leakage, i only leak if i have a uti or some times a bladder spasms, & you can have a good sex life

to stop the bladder spasms if you get them here is a list of meds you can take if you suffer with spasms if you get a SPC

Urispas
Lyrinel® XL
TOVIAZ
Ditropan
DATRUNORM

ive had my one done over 2 years ago now i still get a few spasms but its been better for me now having it done

from fastwheels

This post has been edited by fastwheels: 26 June 2009 - 12:26 AM