“Pee. Pee. PeePeePeePee. Pee. Pee. PeePeePeePee!” My husband and I waved our arms in the air, chanting the words as if we were performing a magical ritual. My daughter was almost 2, and the potty-training had begun. We would sit her on the toilet every few hours and begin our ceremonial dance, urging her to go pee pee on the toilet like a big girl. (Oh, what damage have I done by adding that horrible caveat, “like a big girl.”) Eventually she did pee and that was it. But for women with lower urinary tract symptoms (LUTS), the pee pee dance can become an emotional, mental and physical Three-Step Swing.
It is estimated that LUTS — which includes incontinence, leakage, urgency and/or inability to void — impacts over 50 percent of women in general and nearly 100 percent of women with SCI, MS or other neurological conditions. However, approximately 43 percent of the women with LUTS have never consulted a health care provider for their problem.
“I probably should have gone to the emergency room,” quips Josie Byzek, as she recalls the day her bladder issues came to a head.
Byzek was diagnosed with relapsing-remitting multiple sclerosis in 1998. To successfully manage her condition, she must pay close attention to her body and listen to its cues. “I’m so lucky I can work at home,” says Byzek, managing editor of NEW MOBILITY. “I can take breaks when needed and create a schedule that meets my energy needs.”
Her self-awareness has helped her create a routine that optimizes her quality of life. But when her bladder decided to rebel a few years ago, she found her entire life out of whack. “I couldn’t pee. My bladder was full, but nothing would come out.”
She had been using the Credé method, the process of pushing gently on the bladder with the palm of your hand to trigger release, but one day, during a particularly severe exacerbation, she took pushing to the next step and nearly blacked out from the pain. “I don’t know what I was thinking. Nothing would come out and my bladder felt like a balloon ready to burst, so I took my fist, placed it on the outside of my bladder, then bent over toward the floor, hoping the pressure would force my bladder to open up and let me pee.”
The pain was swift and blinding. Byzek screamed as her body collapsed to the floor. “My partner wanted to call an ambulance but I refused. I was in so much pain that the idea of somebody touching me was unbearable.”
She remained laid out on the bathroom floor until the pain subsided enough that she was able to function. She thought briefly about an ER visit but nixed it for the same reason most women with LUTS avoid treatment: feelings of humiliation. However, she did follow up with a doctor’s appointment and was prescribed Flomax, an alpha blocker that can help increase urine flow by acting on receptors in the bladder neck and urethra, leading to relaxation and improved urine flow.
The Flomax worked, but the side effects were devastating. “I was exhausted,” says Byzek, who struggles with MS-related fatigue. “The Flomax helped me pee more efficiently, but I was so tired, I could not do my job. I seriously thought I would have to make a choice between being able to pee or work.”
That choice may seem drastic, but for women with lower urinary tract symptoms, the shame associated with having an accident can keep them from getting help and living fully. The stigma of urinary incontinence has been an issue of exploration in several studies that linked UI and LUTS with incompetence and aging. In most societies, control and self-restraint are synonymous with notions of adulthood, i.e., if we pee our pants, we are bad, dirty, and should be ashamed of ourselves.
“I think there is a lot of shame associated with not being able to control one’s bodily functions. It may come from childhood, but bladder issues definitely cause feelings of discomfort and embarrassment,” says Byzek. She eventually spoke to a friend with SCI who recommended intermittent catheterizing, so she approached her urologist about that option. He agreed it could work, and it did. “I don’t know why I never thought of that,” she says. “I know so many people I admire and respect who use catheters, but the idea of doing it myself seemed wrong.”
Byzek was able to use intermittent catheterizing to fully empty her bladder and avoid the fatigue associated with medication. Her bladder issues have subsided and she is back to using the Credé method, but she has a reusable intermittent catheter if she needs it. She would prefer disposable intermittent catheters, but that is not what her doctor prescribed. And like most women with LUTS, she’d rather just learn to live with it as it is than continue to rehash the issue.
Foley (Indwelling) Catheters
Melissa Allensworth, 34, a T4 complete para just six years post-injury, has always felt that bladder and bowel issues were the hardest part of sustaining an SCI. “Not walking was a lot easier to adjust to than dealing with my bodily functions.”
Allensworth had a brace in the hospital and was initially unable to self-cath, so the doctors prescribed a Foley catheter. She stuck with it. “I kept the Foley because I’m very active and do not want to worry about finding an accessible bathroom or messing with intermittent catheters. I also hate public restrooms. I would not leave my house if I had to cath every four hours. So many places are not accessible — even friends’ and family homes can lack access.”
Currently she uses a Bard silver-line Foley and Coloplast leg bag. She strives to continue a dynamic existence and loathes the leaking issues that can happen when she has bladder spasms. “When I have leakage or an accident, I feel awful. No one else may know, but I do. It’s such a mental and emotional drain. I hate it. I just want to get out of where I am and go home!”
Michelle Altamirano, with a C6-7 SCI, knows first hand how one’s bladder can quickly diminish one’s dignity. “As far as accidents and embarrassing moments, there have been quite a few. I have had the cath tube accidentally disconnect from the leg bag and leak in public places. I have also had the valve come open and had urine running down my leg. I’ve also gone to empty my leg bag and lost my balance and end up spilling urine all over the floor.”
She admits that mishaps can be embarrassing, but with 25 years experience in a chair, she has accepted that they are just par for the course. She faces such incidents with a positive attitude and a humbled, “C’est la vie.”
She tried IC for about eight months after her initial rehab. “I had all kinds of trouble with leaking,” she recalls. “And I could not cath in my wheelchair due to balance and lack of fine motor skills. It was awful.”
The inability to control her bladder became a real concern for Altamirano when she was planning a trip to Texas. “I was worried about the accidents and my doctor recommended a Foley catheter with a leg bag.” She found liberation at last. “I never felt so independent and relieved. I didn’t have to worry about leaking everywhere. I also didn’t have to worry about withholding liquids.”
But she knows she must be vigilant with an indwelling catheter. “If my leg bag gets too full or I get a kink in the tube, I can get autonomic dysreflexia,” she says. Once she accidentally stretched the catheter to such an extent that it deflated the balloon and the Foley slipped out of the urethra. “It was kind of scary, because I couldn’t reinsert the catheter and went into dysreflexia, until my husband was able to reinsert a new catheter for me.”
Indwelling catheters can be a godsend, but they come with their own set of issues, the foremost being bacterial infections. According to research, “Catheter-associated urinary tract infections are the most severe and common catheter-associated complication, and the use of indwelling urinary catheters should be avoided whenever possible.”
Preventing Infections, Using Intermittent Catheters
For some individuals with SCI, indwelling catheters are the only option. Nancy Kennedy has been using Foley catheters for over 40 years and is well-versed in both the pros and cons. “The Foley catheter gives me the freedom to work, play and live fully. I am a high quad, so there is no way for me to use intermittent catheters.”
But Kennedy has also had her share of UTIs. “My biggest issue with the Foley is recurring UTIs. Initially I had to take antibiotics three to four times a year. Then I found Rochester Medical Anti-Infection Foley Catheter, and I have not had antibiotics since. Not worrying about infections makes a huge difference in both my physical and mental well-being.”
Unfortunately her worry-free days are about to end. Despite significant results in clinical trials, this product has been discontinued. “I’m about to use my last Rochester this week, and I’m really scared. I can’t afford to go back to reoccurring UTIs!”
Like many others with LUTS, Kennedy has a backup protocol to help avoid infection. “I eat healthy, drink a ton of water, take vitamins and use Methenamine. Methenamine is used to prevent or control returning urinary tract infections caused by certain bacteria. It is not used to treat an active infection and can only be prescribed by a doctor.
Altamirano relies on Cran Extract pills from Whole Foods and drinking cranberry juice to help keep UTIs at bay. When Allensworth feels an infection coming, she tries every natural remedy she can think of. “I take D-Mannose, uva ursi, and every other natural curative I can think of. I also drink a ton of water, cranberry and/or blueberry juice.”
Natural treatments like elurra, probiotics, D-Mannose or uva ursi can help prevent and even stave off infections. However, the best medicine is a good bladder management program. Kennedy changes her Foley every two weeks. Altamirano cleans, disinfects and changes her Foley religiously and Allensworth does the same.
Mickey Fowler, a T10-11 para, decided against the indwelling option because of its related side effects, but even intermittent cathing requires consistency and care. Fowler habitually intermittent caths three times a day and has had very little leakage and few accidents or infections in the 30 years since she acquired her SCI. “I take routine natural remedies and try to maintain a regular cathing schedule. I generally cath every eight hours, but I can go up to 12 hours if need be.”
Fowler’s impressive capacity is the result of bladder augmentation surgery five years post-injury, and she loves the results. “I would recommend the procedure in a heartbeat. It has really worked for me.” The bladder augmentation allows her bladder to hold more urine and the consistent intermittent cathing schedule meets her lifestyle needs. She still wears protective clothing, just in case, but rarely has issues.
Today many urologists prescribe Botox injections to get similar results
Foley Catheter: An indwelling catheter that drains the bladder continuously. Needs to be placed below knee level and can stay in for about a month before changing. The urinary opening where the catheter is inserted should be washed at least twice a day while the catheter is in place. If the catheter is leaking or there are crusty areas around it near the urethral opening, the catheter should be changed.
Suprapubic Catheter: A hollow flexible tube drains urine from the bladder via a surgical opening in the abdomen, a few inches below the navel.
Mitrofanoff: A mitrofanoff, also called an appendicovesicostomy, is a tube created inside the body to drain the bladder. During the surgery, the appendix is detached from the large intestine and relocated to the bladder and skin (usually at the umbilicus). This allows the bladder to be catheterized through the stoma.
Intermittent catheterization: Inserting a straight or coudé tip catheter through the urethra into the bladder to drain urine at scheduled times. The catheter is disposable, not permanent.
Bladder augmentation: Also known as a cystoplasty, this surgery enlarges the bladder using a piece of the body’s own tissue, usually the large or small intestine, but the ureters or even the stomach can be used.
Urology 101B — Botox Injections
Dr. Todd Linsenmeyer has expertise in evaluating and helping develop effective management programs for individuals with voiding dysfunctions, including urinary incontinence and urinary retention that result from a neurogenic bladder. He has been the director of urology at Kessler Institute for the past 20 years.
Botox can help with incontinence and spasms, but Dr. Linsenmeyer says that before any Botox treatment should be undertaken, a complete urodynamics study must be done to assess the core issue. “Trying a treatment without a comprehensive study is a shot in the dark. If the treatment does not address the underlying cause, it could make matters worse,” he says. “For example, introducing Botox into a bladder that is already overstretched can cause more leakage, infections and problems.”
He says that every person is different, and every person’s bladder is different even at different times of their life. “There are three foundational constructs that must be addressed before we start conceptualizing a treatment plan. First we must make sure the kidneys are healthy and are functioning properly. Next we want to make sure that the treatment won’t create additional bladder problems, and finally we work together to design a urology program that gives the most function to the individual and works out best for his/her lifestyle.” Before trying Botox, it is a good idea to have a complete urodynamics study.