Overactive bladder, also known as spastic or reflex bladder, is one of the most common challenges of living with a neurogenic bladder, characterized by lack of control due to nerve damage. Bladder spasms occur with spinal cord injuries of T12 or higher. It is vital to address spasms with your urologist, because “accidents” are the least concern: The spasms also create high bladder pressures that can lead to permanent kidney and bladder damage.
Fortunately, there are a variety of options to help you control your bladder. Two options that address all urinary accidents do so by enabling urine to flow freely from the bladder if intermittent cathing isn’t working. One is an indwelling Foley catheter, which goes through the urethra, and the other is a suprapubic catheter, which goes through a surgically created hole near the navel. Unfortunately, neither option addresses spasms. Leading urologists say it is important to manage bladder spasms, and suspect that long-term use of indwelling Foley or suprapubic catheters without also addressing spasms can lead to permanent bladder shrinkage.
The first and easiest option for quieting the bladder is oral medications. Such medications were notorious for their troublesome side effects, but newer medications have far fewer. “I take Myrbetriq, which doesn’t give me any side effects,” says Matt Fritsch, 41, who has been a T6 para for 20 years. “Myrbetriq is super-expensive and my last insurance didn’t pay for it, so I was taking Ditropan, which gave me massive cottonmouth and horrible constipation.”
When oral medications aren’t effective or the side effects aren’t tolerable, urologists are turning to Botox injections to quiet the bladder. Yes, the same injections in vogue for making facial wrinkles disappear can also help you stay continent. “I’ve been getting Botox for eight years and it quiets my bladder enough to enable me to cath every five hours or so and not have any issues,” says Bruce Hammer, 72, an inventor and entrepreneur who is in his 43rd year as a C6-7 quad. He says each Botox treatment lasts about six months. Like Fritsch, Hammer experienced unwanted side effects from Ditropan. “It made me feel lightheaded and gave me really bad brain-fog,” he says.
An option that permanently quiets the bladder, and increases its capacity, is to surgically enlarge the bladder, known as bladder augmentation. Augmentation also makes intermittent cathing easy via a surgically created tube in the belly for emptying the bladder. The downside is that it’s major surgery. “I spent three weeks in the hospital recovering,” says Tami Ridley, 64, a C6 incomplete quad. “I got my bladder augmentation 26 years ago when I was going to law school, partying with my friends [and] having a great life but being hard on my bladder and getting constant UTIs,” says Ridley. “My surgeon said bladder augmentation will be healthier for me. It was and is — [and] it continues to work great. It’s easy to empty and I can hold about 1,000 cubic centimeters.”
Member Tip
“Prior to Botox, I was on Ditropan, but it really messed up my thinking. A urologist taught me an old school trick: Crush one Ditropan pill and put it into a 50 cc syringe, add tap water and put it into your bladder through a catheter, and leave it until the next time you cath. It quiets the bladder, but doesn’t cause any side effects.”
— Bruce Hammer, Sonoma, California
United Spinal Resource Center’s MOST Frequently Asked Question
My bladder was quiet until about a year after my SCI, but now I’m wetting myself even when I cath regularly. What should I do?
SCI Nurse Amy Dannels-McClure responds:
Prior to your injury, the bladder muscle and sphincters worked in unison. When the bladder would squeeze to urinate, the sphincters would open and you would be able to urinate. Post-injury, they both try to contract at the same time, a highly ineffective way to try to urinate as the bladder is trying to release urine against a closed door. This miscommunication occurs with injuries to the spinal cord above S1 and is referred to as “upper motor neuron neurogenic bladder.”
One challenge with bladder management after an SCI is that it changes. How you effectively manage your bladder needs to be reviewed at least annually or when anything changes. For example, when you start seeing incontinence episodes for the first time, it is time to see your urologist. Even if you think your bladder is empty, urine leakage is often a result of incomplete bladder-emptying as there is a failure of your bladder to store the urine and/or the inability of your bladder to release the urine, which creates involuntary overflow urination or incontinence. You may see this increase over time as your body starts to respond to consistent incomplete bladder-emptying. Your bladder wall may start to weaken from being overstretched with high volumes of urine, along with the sphincter tightening randomly.
Help your urologist help you to create the best bladder management program to fit your lifestyle with these preparatory steps:
- Keep a bladder diary. Keep track of fluid intake, output and incidents.
- Ask about a urodynamics test to get a clear picture of how your bladder is functioning.
- Develop a fluid schedule that will work for you.
- Keep track of how often you have a bowel movement and the consistency of the stool. There is a proven connection between constipation and inability of the bladder to fill and empty successfully.
- Keep track of your medications and how often you take them. When you talk to the doctor, listen and ask questions. Ultimately this is YOUR journey and one that needs to work for you while supporting a healthy bladder.
Member Tip:
“My bladder is so spastic that I get the max dose of Botox, and still need to take Myrbetriq capsules. The combination keeps my bladder quiet for about four months, then I start to leak and I add Ditropan XL, which will keep the spasms at bay for another few months. Then I’ll schedule another round of Botox and start the cycle over again.”
— Matt Fritsch, Orangevale, California
Best New Mobility Articles
Options to Manage Bladder Spasms:
Why quieting the bladder is vital, and the dangers of untreated bladder spasms. Eight bladder-quieting options, from oral medications and topical gel, to Botox injections.
FDA Approves Botox:
When to consider Botox and how the procedure works. Wheelers share their experience with Botox.
Guidelines and Options for Indwelling Catheter Users:
Important considerations for users of indwelling Foley and suprapubic catheters, including the importance of managing spasms to help avoid bladder atrophy.
Suprapubic Revisited:
Possible long-term complications of an indwelling Foley. Reasons to consider a suprapubic catheter, the procedure, and long-term management of a suprapubic.
What About Bladder Augmentation Surgery?
Bladder augmentation criteria and surgery explained. A wheelchair user shares his experience.
Best of the Web Resources
United Spinal Resource Center: Types of Bladder Management After SCI:
A look at the primary methods of management for neurogenic bladder.
Bladder Augmentation: What, Why, How?
An animated video explaining and showing how bladder augmentation is performed.
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I was paralyzed during spinal surgery in December 1963 and had a neurogenic bladder ever since for the last 60 years. I am 81. I have a partial injury caused by hemorrhaging C4-C6. After five weeks in the hospital I was able to walk, but my hands and arms were badly atrophied and I had to compensate a lot in order to use them.. I could drive an unmodified car but couldn’t ride or type until I got a metal hands splint that I still use every day. By 1993 I was quadriplegic and in an electric wheelchair, but still working until 2011 when I retired at 69.
I have used none of the remedies given here. But have been using an external catheter and large bags since 1995 with a few accidents and very few UTIs. Recently I have been using a straight tube to a pan on the floor resulting in much fewer sweating caused by autonomic dysreflexia when I have the bag on.
Ron
Oh, Botox, how I love thee! Let me count the ways . . .
I just read the article on overactive bladder. There is another solution that has worked great for me for over 50 years. I’m a C5/6 incomplete quad since 1972. In 1974, I had a sphincterotomy. They cut my urethral sphincter, making it inoperable, and making me completely urinary incontinent. There is no bladder pressure, very few minor muscle spasms and no kidney reflux. I wear a condom catheter and leg bag. Best of all, I have had very little problems with UTIs. I take urine acidifiers to make urine PH about 6 or below and drink about 42 ounces a day of water to keep flushed out. I have friends who have nothing but problems with foley and super public catheters and they have continuous dysreflexia and UTI problems.
If NM hasn’t yet reported on it— I urge you to do a piece about pelvic floor physical therapy. (I read NM because it has many helpful tips and a good sense of community even tho I’m not paralyzed—i have other illnesses that keeps me in bed/wheelchair, etc. I hope I’m not being intrusive. ) A very good PF PT (and you may have to search) can help with spastic or painful bladder, pain with sex, and many other issues. I’d recommend an interview with one of the pioneers of this therapy, Stacey Futterman, who has helped me tremendously. She has offices in NYC and Milburn NJ. https://5pointpt.com/meet-the-team/stacey-futterman