Q: Can you tell me anything about catheter valves? They are produced by Bard and Coloplast and approved for use in the UK. I have found some information on them via the Internet: “Catheter valves are used as an alternative to allowing urine to drain freely into a drainage bag. The valve is connected to the catheter outlet. Opening the valve at regular intervals drains urine. Catheter valves are more discreet than leg bags. And because urine is stored in the bladder, not a drainage bag, they can help keep the bladder in good working order.” Can we expect approval in the United States anytime soon?
— Kathi

A: Kathi, I researched the products you mentioned and provide links below. Catheter valves are designed to work with a Foley catheter, and the concept is fairly simple: A catheter valve fits into the outlet end of the Foley. The Foley prevents urine passing the urethral sphincter. When the catheter valve is closed, the bladder fills. When it’s time drain the bladder, you open the valve and void the urine. Under ideal conditions, this mimics the way a neurologically intact bladder fills and empties.

Under the right conditions, catheter valves look be a viable and discreet option. The “right conditions” include a flaccid (quiet) bladder, and a person diligent about emptying the bladder at regular intervals, as well as hand washing. In the case of a spastic bladder, the system has potential for serious trouble. When the bladder spasms it squeezes the urine; plug the exit with a catheter valve and the urine will back up through the ureters into the kidneys (reflux), which can cause permanent and life-threatening kidney damage. This can also cause scarring of the bladder. Reflux and scarring can also happen if the bladder gets too full before opening the valve. Hand washing is vital because bacteria on a Foley catheter can migrate down the bio-film into the bladder and cause a UTI.

At the moment the discussion is moot — neither Coloplast or Bard offer catheter valves in the United States. I contacted both companies and they cited lack of FDA approval as the reason. Both companies said the large expenditure of time, money, testing and paperwork required for potential FDA approval didn’t warrant the limited market for the device at this time. However, if Bladder Matters readers are interested in catheter valves, it couldn’t hurt to let the companies know.

• Bard: www.bardmedical.com
• Coloplast: www.us.coloplast.com
• More information about the products can be found on Bard’s UK site and Coloplast’s Denmark-based site.

Q: I’m having trouble finding a urologist who knows about the problems of long-term wheelchair users, and I’m hoping you know one. I have two questions. The first one is, nephrostomy tubes are so horribly painful and inconvenient that I would rather die than have another. Is there any place they can locate the tube other than in the back, where it rubs against my chair? I used to lie awake at night crying, or sit in my chair unable to do a thing.

The second question has to do with odor. I have a urostomy, and I’m having problems with really bad odor. It goes away during a course of strong antibiotics but comes back shortly after the course is finished. None of the deodorants on the market come close to controlling the odor. One PCA I have now worked for a veteran who took a pill every day and never had this problem, but didn’t know what the pill was. Another PCA saw a NASA documentary in which they turned urine into drinkable water!

Can you help me with these questions? Thank you.
— Carrie, Boston, Mass.

A: Anybody know a urologist well-versed in spinal cord injury in the Boston area? Email me and I will pass it on. In the meantime I would suggest you start your urologist search at Boston Medical Center. Boston Medical Center is one of 14 “Model SCI Systems” in the country. These facilities specialize in all aspects of SCI care and work together via a national database to improve care, research, and education relating to SCI.

On to your question about nephrostomy. For those who aren’t familiar with the term, a nephrostomy is a procedure in which a tube is surgically inserted through the skin and routed into the kidney. Urine drains from the kidney through the nephrostomy tube into a collection device. A nephrostomy is performed for a variety of reasons, most often due a blockage of a ureter (the fibromuscular tube that delivers urine from the kidney to the bladder). Even if one kidney is fine, if the other kidney is blocked and the blockage isn’t cleared, it takes only about 4 weeks for permanent damage to occur in the blocked kidney. Other reasons for nephrostomy include a hole in the ureters or for certain diagnostic procedures to check kidney function.

A nephrostomy is almost always temporary. Nephrostomy tubes typically enter in the back. A physical medicine and rehab doctor I spoke with said he has seen people with nephrostomy tubes that exited the side of the upper abdomen, but he added that specific placement of the tube may depend on where the ureter is blocked.  He also said that if a surgeon normally performs the surgery on ambulatory patients, he may not have taken into account where your body contacts your wheelchair — another reminder for all of us to communicate, ask questions and require answers before undergoing a procedure. Hopefully you won’t need another nephrostomy — but if you do, ask about placing the tube in a better spot for you.

As far as your question about possible options to reduce urostomy odor, let’s start by explaining a urostomy for readers who may not be familiar with the term. Urostomy, also known as a urinary diversion, is a surgical procedure done to divert urine from a damaged or diseased part of the urinary tract. The most common type of urostomy is called an ileal conduit. In the procedure the surgeon removes part of the ileal conduit (small intestine), attaches one end to the two ureters and attaches the other end to the abdominal wall and creates an opening called a stoma. A person with a urostomy wears an external pouch on the stoma to collect urine.

On to the odor part. Odor is a big deal. The social and psychological effects of odor can be lost on some physicians. In general, urine from a neurologically intact person is sterile and has little or no odor. The fact that the odor from your urostomy disappears during a course of strong antibiotics, yet returns shortly after the antibiotics are finished, would suggest chronic asymptomatic bacteriuria — bacteria that is ever-present but not causing physical symptoms such as fever, aches and chills. An argument could be made that urine with an odor so strong that it affects your well-being is a symptom in and of itself. And according to the National Kidney and Urologic Diseases Information Clearinghouse, strong smelling urine is a sign of infection.

The NKUDIC suggests drinking at least eight full glasses of water each day to help flush out infection. Drinking plenty of water also helps dilute the urine and hopefully the smell. It also says certain foods like asparagus and seafood may cause a strong odor (other sites include cheese, eggs, garlic and onions). I ran your question by a PM&R doctor who offered some additional ideas on odor control. The first idea is, bacteria don’t like to live in acidic urine.  Ask your urologist about getting a prescription for a pill called Hiprex (hippuric acid) that you take daily to increase the acidity of your urine. Hiprex may be the pill your PCA mentioned. The second idea is ask your urologist about taking a daily antibiotic suppressant like Nitrofurantoin or Macrodantin.  Many urologists prescribe these antibiotics in a daily low dose as prophylaxis against UTIs for people with spinal cord injury. The daily low dose may be enough to suppress the bacteria in your system that are causing the odor.

Last but not least, as I mentioned in my first column, keep your equipment clean. Ostomy Network says to rinse your pouch daily (if you are using a two-piece system). Also rinse your drainage bag each time you empty it. Once a week, wash out your night drainage bag by using a few drops of liquid dish soap and warm water — then rinse thoroughly with warm water. Then mix a solution of 1/2 cup white vinegar and 1/2 cup water, add it to the bag and let it soak during the day, then rinse with water. Pouches and drainage bags can also get colonized with bacteria. Switching to a new pouch and bag may help. And don’t forget to clean your cushion, toss your cushion cover in the wash and give your wheelchair upholstery a good wipe down.

As for turning urine into drinkable water — so far it’s been difficult to get a return phone call from the folks at NASA. Best of luck!