I’ve rarely been kind to my bladder, so it was inevitable that problems would arise by the time I hit middle age. But who worries about things like leakage when you’re a young wheeler having fun?
A trip from Urbana-Champaign, Ill., to Denver during college back in the ’70s, is a prime example of the torture I blithely inflicted on my bladder. Riding a bus for 24 hours with the University of Illinois wheelchair basketball and cheerleading teams, I decided to “hold it” for the entire trip back to campus, believing my bladder could wait another thousand miles or two before it had to be emptied. It waited, but it wasn’t happy.
That was extreme, but “holding it” for six, eight, or even 10 hours has been common all the years since. Pre-ADA days, I assumed I’d never find an accessible bathroom outside home, so I hardly ever tried. Post-ADA? An accessible stall is usually there somewhere, but some non-crip is likely using it.
The payback for bladder abuse was gradual. First was the annoying trickle (all women “of a certain age” experience that, right?). Then came the unwanted stream, soon followed by the anytime/anywhere flood. Incontinence became the newest word in my post-polio vocabulary.
My urologist, who over the years begged me to drink more water and void more often (don’t you love that word — void?), was involved in the U.S. clinical trials using Botox injections into the bladder to regain control. At the time, test subjects were limited to people with multiple sclerosis or spinal cord injury, which ruled me out.
Instead, he prescribed the medications (not all at the same time!) familiar to many in the incontinence community: Vesicare, Ditropan, Detrol and the Oxytrol patch. Did they work? A wee bit in the early trickle stage, perhaps, but nothing helped curtail the floods once they started. And when not calming the bladder, those medications were creating an incurable case of dry mouth and draining my budget due to sky-high co-pays [for more on managing dry mouth, see Para/Medic, September 2013].
But dry mouth wasn’t half as bad as the anxiety and embarrassment accompanying incontinence. At work, when one wants to be at their professional best, I kept a change of clothes and a pile of towels in a file cabinet. I prayed every day that if there was to be a flood, that it happen in my office rather than someone else’s. It was just my luck that the women’s bathroom was way down on the other side of the floor; hence, I rarely made it in time. I spent most of the day worrying about the odor. Talk about work-related stress.
My social life took a nosedive because I wouldn’t risk wetting myself in a restaurant, theater or at a friend’s place. I rarely got to a store and back home without an accident. Travel on a plane was out of the question.
So while I was hiding at home doing countless loads of urine-soaked laundry each week, the results of the Botox/bladder trials were more than promising, and I was allowed in as the trials were opening up and winding down.
How Botox Worked for Me
How does the Botox treatment work? According to Allergan, the maker of Botox, “incontinence happens when the bladder muscle involuntarily contracts, increasing the pressure in the bladder and decreasing the volume of urine the bladder can hold. … But when Botox is injected into the muscle, it causes the bladder to relax, increasing the bladder’s storage capacity. …
The procedure is accomplished with a cystoscope. A tube with an optical lens at the tip is inserted, and the doctor sees the bladder interior while injecting the Botox.
In January this year, the U.S. Food and Drug Administration approved using Botox “to treat adults with overactive bladder (estimated to be 3.2 million Americans) who cannot use or do not adequately respond to medications,” reported Allergan.
Note that the federal approval is for people with and without disabilities.
The FDA warns that side effects can include “urinary tract infections, painful urination, and incomplete emptying of the bladder (urinary retention). People who develop urinary retention may need to use a catheter until the urinary retention resolves.”
Expect to take antibiotics before, during, and after a Botox treatment to lower the chance of developing an infection from the procedure.
Unfortunately, I feared my first treatment might be the last since I felt every needle prick as the Botox went in. The local anesthetic injected into the bladder just before treatment helped not one iota. According to my urologist, few others experienced such extreme pain. Lucky me.
Despite the pain, I regained control of my bladder within 24 hours after that first treatment, and it lasted for seven months. I had no side effects except for some mild burning the first time I urinated after the treatment.
According to the FDA, “treatment with Botox can be repeated when the benefits from the previous treatment have decreased, but there should be at least 12 weeks between treatments.”
I’ve had four treatments so far, and am up to nine months in between. I’m also relieved to report the treatments are now practically pain-free since my urologist is using a much smaller needle to penetrate the bladder muscle. The tiny needle, which I’m told is thinner than a strand of hair, has eliminated the need for the pre-treatment local anesthetic.
In fact, my Botox treatment takes under an hour, with a follow-up appointment three months later. That’s easier and less time than some dental work I’ve suffered through. Pre-approval from my insurance company has gone smoothly and I’m responsible for just the usual office visit copay.
NM Readers Weigh In
Best of all, the Botox injections have given me my life back, meaning I can go out without fear of an accident — and no more urine-soaked laundry — which are very big deals. So is sleeping through the night with no trips to the bathroom.
My rave review of the treatment is shared by other NEW MOBILITY readers, who commented on NM’s Facebook page earlier this year:
“I’ve been receiving Botox injections for the past three to four years. I’ve had great — life-changing! — results from it. I’ve not had an accident since beginning them. Treatments (for me) usually last about a year, but I’ve gone as long as 18 months.”
— Stephen Feldman
“I have been getting them [Botox treatments] for about five years. Can you say life changing? They last me a year to a year and a half.”
— Mona McAleese
“Due for my fourth soon … great stuff.”
— Kelly McCall
“A little over a month ago, I had my first Botox injection. Seems to be working just fine, so far!”
— Beth Crenshaw
Before the treatment, expect to give a urine sample to ensure you’re infection-free — a lesson NEW MOBILITY reader Laura Hayne learned: “I was actually scheduled for it yesterday but had a bladder infection, so now I’m having it done next Tuesday. I can’t wait as this is the fifth or sixth time I have gone back for it in the last five years or so,” she told us via NM’s Facebook page.
As with any medical treatment, results are not the same for everyone. Paula Fox shared her experience: “I have had three Botox injections, about six months apart. They helped, but the effect wore off gradually. I tried to have the next treatment before the effect completely wore off. … The Botox treatment is not perfect. I still have to watch for my catheter getting clogged, which will also cause wetting. I still keep myself well padded with Depends and a dishtowel to protect against unexpected accidents. But at least I’m not having to change wet clothes during the day.”
The biggest problem I’ve had post-treatment is reminding myself to go to the bathroom. My bladder rarely feels full and hence, the pressure to empty is minimal. My doctor advises setting up a schedule to go or cath every three hours to make sure the urine keeps flowing. I’ve been known to stretch it to five or six hours, which I admit is not the best idea.
Speaking of which, my three (er, make that four) hours are up right now, so it’s time to sign off and head to the loo.
Sue LoTempio will be blogging for NM’s new website at www.newmobility.com.
Botox Phase III Clinical Trials
The Hollywood press love to speculate on which celebrity is the latest to receive Botox injections in the forehead, brow or neck to temporarily get rid of unwanted lines and wrinkles, but the Botox neurotoxin is also used to treat certain medical issues, such as:
• Abnormal head position and neck pain that happens with cervical dystonia (neck muscles contract involuntarily, causing abnormal movements and awkward posture)
• Severe underarm sweating
• Stiffness in elbow, wrist, and finger muscles in adults with upper limb spasticity
• Chronic migraine headaches
But its recently-approved use to treat incontinence hits closest to home for many of us.
Allergan estimates that urinary incontinence due to bladder muscle over-activity in those with multiple sclerosis or spinal cord injury “is a chronic condition affecting approximately 340,000 people in the United States. … Current standard of care includes oral medications that are taken regularly; however, it is estimated that 71 percent of people stop taking at least one oral medication within 12 months. If oral medications fail, then surgery may be considered.”
Is there any wonder that 71 percent stop taking the oral medication because of how uncomfortable the side effects can be [dry mouth, trouble swallowing, constipation]?
Many people who have incontinence don’t want to go to the doctor because they are so embarrassed by the problem, which is a taboo subject even within some families. But “when not adequately managed, urinary incontinence … in people living with MS or SCI can lead to skin irritation, ulcers, pressure increases in the bladder that can cause kidney failure, as well as recurrent urinary tract infections,” says Dr. Victor Nitti, vice chairman, Department of Urology, New York University Langone Medical Center, who was involved in the Botox Phase III clinical trials.
Those trials, Allergen reported, involved 691 subjects (381 with MS; 310 SCI, T1 injury or below), who had an inadequate response to or were intolerant of the usual oral medications. “The results showed significant reductions in the frequency of urinary incontinence episodes in patients treated with 200 U. of Botox neurotoxin compared to placebo within two weeks and approximately 20 fewer urinary incontinence episodes at week six versus placebo,” Allergen reported.
The most frequently reported adverse reactions within 12 weeks of treatment, according to the company, included urinary tract infection (24 percent), urinary retention (17 percent), blood in the urine (4 percent), fatigue (4 percent), and insomnia (2 percent).
I experienced none of the possible side effects, and in fact, the last two —fatigue and insomnia — improved since finally I was sleeping through the night.