Suprapubic tube

[tim121]

Hi all. I saw the other thread on this and found some great information. I might have the procedure done within the next couple of months. I'm 32 and, have interstitial cystitis and can rarely get any sleep due to frequent urination. I was wondering what life is like with a suprapubic tube. Is the bag on the upper leg or lower? Can I still play sports? Can I lift weights or is there potential of having a hernia? Would I be able to get a full 8 hours of sleep? Do I need to stay on medication while on it? Are there certain hospitals/clinics I should look for to have the surgery done? Is the tube below the belt line or above? Any feedback would be great. I've been looking for information for a while from people who've had this and, finally, came upon this site by googling suprapubic tube testimonials. Thank you very much.
Tim

[gjnl]

Originally Posted by tim121

Hi all. I saw the other thread on this and found some great information. I might have the procedure done within the next couple of months. I'm 32 and, have interstitial cystitis and can rarely get any sleep due to frequent urination. I was wondering what life is like with a suprapubic tube. Is the bag on the upper leg or lower? Can I still play sports? Can I lift weights or is there potential of having a hernia? Would I be able to get a full 8 hours of sleep? Do I need to stay on medication while on it? Are there certain hospitals/clinics I should look for to have the surgery done? Is the tube below the belt line or above? Any feedback would be great. I've been looking for information for a while from people who've had this and, finally, came upon this site by googling suprapubic tube testimonials. Thank you very much.
Tim

Hi "tim121,"
Welcome to the Care Cure Community. You've come to the right place for information about supra pubic (SP) catheters and personal experiences living with an SP.
Is the bag on the upper leg or lower?
The urine collection bag can be placed on either the thigh or below the knee on the calf. And, some people use belly urine collection bags. My choice is to wear the urine collection bag on the inside of my calf. I use Urocare 1000 ml collection vinyl bags (http://www.urocare.com/products/Uro-...aryLegBags.php) and a Urocare leg bag holder (http://www.urocare.com/products/FabricLegBagHolders.php). I secure the catheter and extension tubing to my thigh with paper tape just above where I connect the catheter to the tubing and once again in the middle of the extension tubing. I use a Bard, Bardex Latex Foley Catheter, 16FR (French) with a 5cc balloon which is filled with 10cc of sterile water or normal saline. I do not have latex allergies and have not had any trouble with sediment. I urged my doctor to use 16 FR because I wanted the tube to be flexible and I have a few dozen of these catheters from when I was wearing an indwelling urethral foley catheter. For many people 16FR is too small and they have to graduate up to 18FR-24FR. I haven't had any problems using the 16FR, but the size will all depend on how much sediment you produce and how much trouble you have with keeping the urine flowing.

Can I still play sports? Can I lift weights or is there potential of having a hernia?
Absolutely. People even swim with SPs in place. Weight lifting should be no problem at all. There really isn't anything to herniate. The stoma site will be tender and irritated looking while it is healing, but after about a month, the stoma will have formed a tract into the bladder (Your doctor will verify the healing after the first 30 days when he changes catheters for you. From then on you or a caregiver can change the catheters at home). You must keep the stoma clean and moisturized, but if you take proper care of it the stoma should be healthy and normal skin color and cause you very little or no awareness of its placement.

Would I be able to get a full 8 hours of sleep?
Yes....a glorious 8 full hours of sleep....straight through. All though if you have been waking up a lot at night to cath or go to the toilet, it will probably take some time to retrain yourself to sleep through the night. I use a Urocare rigid night drain bottle (http://www.urocare.com/products/Urin...nageBottle.php). I place the bottle in a plastic shoe box, lined with a cotton hand towel. I safety pin the leg bag to the side of the bed (through the leg strap holes) and connect the leg bag to the tubing of the drain bottle at the drainage end of the leg bag. Many people use disposable night drain bags of various sizes and configurations. I would suggest a night time drainage device that holds at least 2000 ml of urine so you don't have to worry about overfilling the bag. My feet have a tendency to swell during the day and it is not unusual for me to have 2000 to 2500 ml of urine in the bottle in the morning after a night's sleep with my feet slightly elevated. Whatever collection devices (leg bags and night drain devices) you use, you must keep them scrupulously clean on a daily basis. The rigid drain bottles cost a little more front end, but they last a long time. The disposable bags, cleaned daily, are usually thrown away every 2-4 weeks.
I use bleach to clean the rigid bottle and tubing, and alcohol to clean the vinyl bags.

Do I need to stay on medication while on it?
Many people take antispasmodics or anticholinergic drugs (like oxybutinyn) to deal with bladder spasms.

Are there certain hospitals/clinics I should look for to have the surgery done?
The placement of SP catheters is a common community medical procedure. Most urologists either do this procedure in their offices or on an outpatient basis at a hospital or surgery center. The procedure is very quick, probably taking less than 15 minutes of the surgeon's time. Because I am a c-6/7 complete quad who suffers from autonomia, my urologist ordered a general anesthesia. I have read about people who have the placement in the morning and go out to a movie that afternoon or evening.

Is the tube below the belt line or above?
The stoma is placed about 1, possibly 2 inches above the pubic bone, generally in line with the belly button. Supra is Latin and means "above." So supra pubic is "above" the pubis. I asked my urologist to place the SP as low as possible so as not to interfere with wearing an abdominal binder and other clothing.

Search this site for other threads on the subject and feel free to ask any other questions as they occur to you.

All the best,
GJ

[SCI-Nurse]

Hi,
I agree with teh above information. Please ask any further questions if you need to.

AAD

[tim121]

Thank you GJ and AAD for taking the time to answer my questions. You told me that you prefer putting the bag on the lower leg. If I put it on the thigh, would it be noticeable if I were wearing shorts? I'm assuming that it's visible when you're swimming. Is that the case? That's still a small price to pay for a good night's rest however. Thank you again and take care.

[tim121]

Hi. I was reading through some of the other postings on the SP tube and had a couple of other questions if you guys wouldn't mind replying. Does the SP tube cause the bladder to shrink and potentially degenerate the kidneys? My bladder functions, albeit at a low capacity. Is there a way to clamp it during the day and just urinate when I feel the urge and then unclamp it at night or is that not possible? Also, would there be any affect on my ability to have sex? Thank you for the valuable insight. It really helps in trying to find a higher quality of life than the one I have now.

[SCI-Nurse]

Any indwelling catheter (urethral or suprapubic) can cause bladder shrinkage over time. Use of anticholenergic medications will help reduce this risk.

It is not advisable to clamp the catheter as this can cause reflux of urine up the urethra. Damage to the kidneys is not necessarily automatic as long as you avoid anything (like clamping) that can cause reflux (backflow) of urine up the ureters.

You will be at some risk for bladder cancer, so once you have had the catheter for 5 years or so you should start annual tests to screen for early signs of this.

A major reason to have a SP vs. a urethral indwelling catheter in men is that the SP does not interfere with genital sexual activity, while a urethral catheter definitely can be a problem.

(KLD)

[TheDuder]

Originally Posted by tim121

Hi all. I saw the other thread on this and found some great information. I might have the procedure done within the next couple of months. I'm 32 and, have interstitial cystitis and can rarely get any sleep due to frequent urination. I was wondering what life is like with a suprapubic tube. Is the bag on the upper leg or lower?

In fall/winter when i wear jeans, the leg bag is strapped to my calf over my sock, nobody can see it at all. I'm a C-5/6 quad so it took me about a month when i got home to figure out the best way to empty the bag on my own, but soon after it was very easy. In summer when i wear shorts, i don't use the extension tube and attach the bag on my thigh. By buying longer shorts, the bag isn't seen.

Can I still play sports?

Absolutely

Can I lift weights or is there potential of having a hernia?

Never heard of that before. That said, since i'm a quad i can't really lift weights. To keep up my arm strength i just take my dog on long walks pushing up hills a lot till my arms are burning and use a gallon jug of water. I'm guessing though that you are a para and thus have much better use of your hands.

Do I need to stay on medication while on it?

For many years i suffered on and off with dysreflexia until i got on Vesicare which i take once a day. That took away nearly all of the dysreflexia.

Does the SP tube cause the bladder to shrink and potentially degenerate the kidneys?

Yes the bladder does generally shrink over time, but i got hurt when i was 22 and am now 40. I've had the SP catheter nearly the whole time and while my bladder has shrunk over those 18 years, not to the point it's caused me problems.

Is there a way to clamp it during the day and just urinate when I feel the urge and then unclamp it at night or is that not possible

I've never had any desire to do this, but i can't see why it couldn't be done. Simply just pinch the catheter which is silicone and thus easy to pinch. Then find something which can keep it pinched until you went to bed.

Also, would there be any affect on my ability to have sex?

Well, it's never caused me any issues during sex besides having to deal with the uncomfortable feeling the first time you get naked with a girl, especially if they don't know much about issues like catheters and being paralyzed. When it comes to the actual sex though, the SP catheter is probably an advantage over people who have to cath because you don't have to ever fear pissing on yourself/the girl during or after sex. Just empty the bag right before getting in bed and if the bag is connected to an extension tube, it's easy to move it far enough away to where it doesn't interfere with the action.

Plus, from my experience, a girl who is willing to date or simply have a one night booty call with a crippled guy, they are going to be understanding in most cases of the whole leg bag/catheter situation, especially if you mention it before stripping off your clothes. Also, just do what i do and keep some hand-wipes on a table next to the bed. That way you can quickly and easy clean around the site before any potential great feeling sucky sucky would go on.

It's obviously your decision and if you're a para instead of a quad, i could see why you initially chose to cath over having an indwelling SP. For me though, not only did very limited hand usage make me choose the SP route, i simply didn't want to deal with the hassles of cathing a bunch of times each day, monitoring how much i drink, leaking, etc.

Plus, having a leg bag instead of having to cath in situations where bathroom access for a wheelchair isn't around or a major hassle to get to can be an asset. For example, quite a few times in summer i've been at picnics or parties at a park where no bathroom is near besides a porta-potty or being faced with pushing over tons of grass. Chairs don't fit in a porta-potty either, so in those situations i'll just find a place nobody is near and discreetly empty the bag in the grass. I've also found myself in other situations over the years where say a house doesn't have a bathroom i can get into which sucks. Well, since i don't have to cath, i'll wait until the bag is totally full and then if i have no choice, i'll just say i need some air and find a spot of grass outside to empty the bag in.

[Mac85]

Hey TheDuder, I'm going to get my s/p procedure done next month. How do you empty your own bag - especially using a manual chair.

[SCI-Nurse]

I don't believe that this OP has a SCI. They indicated that they do have interstitial cystitis as the reason for having the SP catheter inserted.

(KLD)

[gjnl]

Originally Posted by SCI-Nurse

I don't believe that this OP has a SCI. They indicated that they do have interstitial cystitis as the reason for having the SP catheter inserted.(KLD)

Yes, I was of the same opinion when I read the thread that "tim121" started, but what is your point? Does it matter if he has a spinal cord injury (SCI) or not? The original poster, aka "tim121" (OP) stated that he was searching the internet for information from actual supra pubic (SP) catheter users and what better place than here to get that kind of "rubber meets the road" experience and feedback. The questions he posed were good questions from which anyone with SCI could benefit. I really don't think the Care Cure Community is such an exclusive place that we can't share information with others looking for good, solid information.

All the best,
GJ