When I was first injured, the biggest shock was losing control of my bladder rather than the use of my legs, and it still has the biggest impact on my daily life. It also has an enormous effect on my sex life. Members of this forum will no doubt be aware of the effects paraplegia, but most people just assume a para’s legs don’t work. I think they’d be shocked to know I was quietly filling my leg bag as I talked to them. 🙂
My history of bladder management
About thirteen years ago my urologist at the time suggested I might benefit from an artificial sphincter implant. It sounded ideal so I went ahead with the operation. I didn’t realise before hand how major the operation would be (I had a clam cystoplasty as well to enlarge my bladder and make it less spastic) or I wouldn’t have agreed. Anyway, my body rejected the implant and after a further two implants it was removed permanently. This left me with a large bladder, which should have been ideal, but because I’d had a sphincterotomy as part of the procedure I found I’d leak without any warning whatsoever so I had no option other than to wear condom drainage 24/7. This in itself didn’t cause any problems re ITU’s but I sometimes got an infection from self doing ISC. I hated wearing condoms all the time and my skin would occasionally break down so I sometimes fitted myself with an indwelling catheter so that I could feel more ‘normal’ and let a little air get to my bits. This routine worked well for a number of years but I had a problem with a drug I’d inject for sexual function and I ended up having a number of sphincterotomies, the last being in December. These operations have not only left me very free draining but, because my sphincter has been cut so much, I find I tend to leak a little around the balloon of a foley so I only use one occasionally.
Here is a detailed description of the various types of incontinence products I’ve used.
This is basically a condom with an open end that connects to the tube of a leg bag or night bag. There are two types, latex and latex free. Latex free are considered better because many people are allergic to latex but personally I prefer the latex variety because I find them thinner and less likely to pop off (this sometimes happens with obvious results). They can be secured in place by means of adhesive, a double sided adhesive tape, or they can be self adhesive. My personal choice is Manfred Sauer extra thin latex condoms secured with a spray adhesive – which is tricky to apply until you’re well practiced. I’ve found that the self adhesive condoms can stick to itself which can prevent urine from flowing and causes the condom to come off. I’m not very keen on the adhesive tape method either because I’ve had these fail a few times, but of these I find Manfred Sauer’s more secure. I also use Manfred Sauer leg bags and thigh bags (when I wear shorts) – and no, I’m not a rep for Manfred Sauer! 🙂
Similar to a condom but it just adheres to the glans of the penis. I tried this product a few times but unfortunately, because I have a partial meatomy, it didn’t work for me otherwise it would be my preferred method of bladder control.
Intermittent Self Catheterisation:
These are flexible, single use catheters that are fed down the urethra until they enter the bladder. After the bladder has emptied the catheter is removed and discarded. It’s risky using these as they can cause a UTI if equipment and surroundings aren’t sterile. They can also cause strictures or even pierce the urethra or bladder if one isn’t careful.
Indwelling catheters (Foley):
These catheters are held in place by an inflatable balloon that presses against the bladder neck, so preventing leakage. They are meant to stay in place for up to thirty days and should ideally be inserted by a qualified health professional. They should not be experimented with because as well as causing UTI’s they can cause serious injury.
The artificial urinary sphincter is an implantable device that has three components:
1. an inflatable cuff
2. a fluid reservoir (balloon)
3. a semiautomatic pump that connects the cuff and balloon
Open surgery is the major form of surgery for the implant. The cuff is secured around the bladder neck and is connected to the pump, and the balloon is situated in the pubic region (it felt like the abdomen to me). The pump is placed in the scrotum or in a pouch below the abdomen. Fluid in the cuff keeps the urethra closed by pressure, allowing continence. To urinate, one temporarily deflates the cuff by pressing the pump. The urethra opens and the bladder empties. The cuff closes automatically. I thought this was a brilliant solution to incontinence and was really sorry when mine had to be removed. You can find out more about artificial sphincter on youtube.
Living with incontinence can be inconvenient, embarrassing and depressing and becomes a major part of one’s daily routine. For me, the main draw back is that I can’t plan ahead because my bladder just empties when it wants to, and I’m constantly feeling my leg bag to see if it needs emptying. It can be very awkward in a theatre or some such place and is particularly inconvenient on a plane, where the toilet is rarely accessible. I found the best solution is to carry a portable urinal (a plastic bottle will do, lol) and discreetly empty my bag into it if I’m desperate. On long journeys or flights I have to restrict my liquid input which isn’t good. As well as bladder incontinence, an SCI usually causes bowel incontinence, but this is usually managed successfully.