Q. My indwelling urethral catheter leaks all the time — and it is bumming out my sex life! I am an active quad (C5-6) so I have been considering a suprapubic catheter. What do you know about this?
Q. What is a “chemical sphincterotomy”? A guy on my wheelchair basketball team said he was going to have one before spending a year in Mexico, and I didn’t understand what he was talking about. He said quads could do it, too.
First, the suprapubic catheter. Suprapubic surgery bypasses the urethra and creates an opening in the abdomen just above the pubic bone, through which urine is drained. Once healed, the surgical site becomes the point of entry for a short-term indwelling cath that empties into a legbag. Advantages include drier nether regions than with a urethral catheter and, of course, less interference during sex. But it’s not a perfect system. Read on.
The surgery — officially called suprapubic cystostomy — is simple and short (about 10 minutes). After making an incision, the surgeon inserts a Foley catheter through the cystostomy site (stoma) and into the bladder. The balloon at the end of the Foley is filled with 30cc’s of sterile saline and retracted so the balloon pulls the bladder up against the stoma. There are no stitches required, the Foley catheter stays in place, and the hole in the bladder scars and heals to the hole in the skin (usually taking about a month) in what looks like a “bladder piercing.”
If you’ve had previous bladder surgery, the procedure is usually performed with the aid of a cystoscope, which is inserted through the urethra to shine light against the bladder wall. The cystoscope is adjusted until the light is visible through the skin just above the pubic bone — like putting a penlight in your mouth to see it shine through your cheek. That’s where the incision is made.
The convenience factor for women boils down to access; the surgeon-made stoma is much easier to see and work with than the plumbing you were born with. And suprapubics keep you drier — indwelling urethral catheters generally result in more leakage, because they stretch the urethra, and more pressure sores because of the wetness.
That’s not to say the system is care-free. The catheter must be changed every two to four weeks, and your doc may want you to clean the skin around the stoma every day. If you have a spastic bladder, you will still need to take anti-cholinergic medications like oxybutinin (Ditropan) to prevent permanent damage to upper urinary tract when excess pressure forces urine to back into the kidneys.
Other risks should be considered. Journal studies vary in their results but show 36 percent to 65 percent of people using suprapubics develop bladder stones within 10 years. Dr. Mark Fredrickson, a physical medicine and rehabilitation physician and a professor at University of Texas at San Antonio — and a quad himself — reports that people who have had suprapubics for 10 to 20 years have significantly atrophied bladders (smaller and weaker with stiffer walls and less capacity to hold or pass urine). But atrophy is expected with indwelling catheters, as well.
The jury is still out on whether suprapubics keep UTIs at bay better than indwelling urethral catheters. There haven’t been any good studies, and urologists themselves disagree on this point. But having the catheter farther away from the anus probably doesn’t hurt, as the bowel is a common source of E coli.
So should you do it? Several physicians indicate that in some teaching hospitals and at least one major rehab center the suprapubic is being pushed as “the” way for a people with hand involvement to manage their bladder, saying “If a new quad comes in to this rehab center, they are going out with a suprapubic.” Does this mean it’s really the best solution? As always, it depends on your lifestyle and your individual reactions to the surgery, the equipment and the maintenance.
The good news is that if you are having problems or concerns, the suprapubic surgery is reversible — and there are other options that may work for you.
Now, for the second question. A “chemical sphincterotomy” is a temporary sphincterotomy, as opposed to a surgical sphincterotomy. It essentially relaxes the urinary sphincter for six to nine months, allowing men to switch from intermittent cathing to an external catheter that empties into a legbag.
So why would I want that? you’re asking. Isn’t life as an active para better without legbaggage? That depends.
Reasons to try it include 1) reducing UTIs and the long-term damage they cause, 2) addressing chronic leaking between intermittent cathing, 3) protecting your kidneys by reducing reflux and 4) ditching your anti-cholinergic meds and the nasty side effects (including dry mouth, blurred vision, constipation, thermoregulation problems, and confusion) that go with them.
For some, it may be more about time management or addressing hygiene issues in difficult environments. Perhaps you are going into an intense period of work or school where stopping every four to six hours to cath isn’t practical. If you are going on a trip to a developing country, it may not be practical or possible to do clean intermittent cathing. Also think about the hassles of IC when camping, or going on kayak or boat trips, entering an active ski season or during any activity where it isn’t convenient (and there is no privacy) to stop and cath.
Maybe you work at an occupation that has a high risk of infection, be it dairy farming or working in microbiology. In these situations a chemical sphincterotomy and reflex voiding into an external catheter and legbag starts to look convenient and much safer in terms of UTIs and the dangers of long-term bacteria in the urine.
For quads, it’s an alternative that may make more sense than having a caregiver perform intermittent catheterization or than living with an indwelling catheter, whether it’s urethral or suprapubic.
And everyone has the chance to try reflex voiding without having to commit to an “all or nothing” decision on a surgical sphincterotomy. Plus it doesn’t have the risks that a surgical sphincterotomy does — risks like profuse bleeding during the surgery and a 30 percent chance of losing reflex erections.
The procedure boils down to an injection of Botulinum A toxin — yeah, the same Botox we told you about for quieting spastic bladders — into the urethral sphincter. Like a lot of other procedures, in order to ensure you are a candidate for a Botox chemical sphincterotomy, your doctor needs to run a urodymanics test to make sure the bladder muscle will contract to empty and make sure there is no urine backing up into the kidneys.
The procedure is simple. A cystoscope is inserted into the urethra and 100 to 200 units of Botox are injected into the sphincter. Like other cystoscope procedures, anesthesia may be needed, depending on the level of injury and risk of dysreflexia. Effects are usually noticed within a few days.
External collection products for men have improved to the point where this really is a viable option for active wheelchair users. Botox sphincterotomies were available in the 1980s, but back then urologists rightly said, “Why convert someone to a free flowing urine status when there isn’t a dependable external device to keep them dry?” The only external catheters available back then were condom catheters that would frequently leak or come off, creating excess moisture that would lead to risk of skin breakdown and cause embarrassing accidents. External catheters used to be “one type (doesn’t) fit all.”
Today manufacturers are making many styles of external catheters in many sizes, from pediatric to extra large. The selection can ensure any man a good fit. External catheters are also available in different materials like silicone to avoid latex allergies, and one of the newer models attaches directly to the tip of the penis. This avoids problems such as skin irritation to the shaft, and problems with the condom-type external catheter “rolling” off the shaft. In addition, new leg bag designs like sports bags can be worn inconspicuously under shorts or swimsuits.
Insurance coverage is not a sure thing, so be sure to get prior authorization from your insurance company before having this procedure. Botox has been approved for use in skeletal muscle, and the sphincter is skeletal muscle. This means technically it is “on label use” but it is still fairly new to urology. Some insurance companies are paying, some aren’t. Because the procedure is just starting to catch on, there will need to be more supportive data to get more insurers to cover the procedure. Botox for different types of bladder management has quite a buzz going and Allergan, the makers of Botox, are doing extensive research on urological applications.
The beauty and the bummer of this procedure lie in the temporary nature of Botox. Some people find that a temporary sphincterotomy works well for bladder management during adventures or busy times in their lives, and then they go back to intermittent cathing. Others prefer external cathing and go back for Botox again and again when the procedure wears off. And still others decide that this system works well for them — but they tire of going back for the procedure every six to nine months, or find that their insurance refuses to pay for repeated procedures. For them, the temporary sphincterotomy is a way to predict how they would like a permanent surgical sphincterotomy. The key is exploring your options, and a Botox sphincterotomy may be a good option to try.