Caregivers, the men and women who care for family members and loved ones, play a vital role in the lives of people with paralysis. Share the challenges and the joys, or just sound off.
Is there anything wrong with her mental capacity? I am not familiar with spina bifida. If not, i would think she would understand the "icky" factor and the stress it is putting on you. When she does cath, make sure she stays on the toilet until everything is out of her bladder(or does she not use the toilet?). Then if she is truly paralyzed the urethra should stay closed until it is forced open with another catheter.
If there is breakthrough urine between cathings, you should definitely talk to a urologist about it. This is a common and unpleasant symptom of a UTI (urinary tract infection). These can be cleared up with antibiotics in just a week or 2. I have had multiple infections in my 13 years, but the pills always worked quickly to clear them up. I take an antibiotic every day to prevent any future infections, and another medication for bladder health.
The name of my antibiotic is Trimethoprim, and I take 100mg every morning.
The name of my bladder health medicine is Vesicare, and I take 10mg every morning. I used to take ditropan XL for this, but I had to change when I started medicare.
When you say briefs, do you mean protective underwear? I have these in case I do start leaking from an infection. They are basically diapers, but elastic sides instead of tabs. They work, but only for small-medium amounts of urine.
Let me know if any of this helps you or if you have other questions, Jessie
Based on your description, I'm assuming your sister has myelomeningocele. I have that form of SB as well, at the L5/S1 level.
Anyway, while reading through your post, it seems a major part of the problem may be stubbornness or apathy. I'd really recommend sitting down and talking with your sister about your concerns. See if there is a reason why she is cathing less than she should (and remind her that cathing insufficiently can cause severe medical consequences).
Also, when you are able to get an appointment with her doctor, ask him or her about ways to improve continence. There are medications to improve bladder health, as Jessie stated, and there are also surgical procedures to strengthen and enlarge the bladder. I had a bladder augmentation, also known as an augmentation cystoplasty, when I was in 3rd grade, and roughly 20 years later, I seldom have leaks (less than 10 times in the 20 years).
I certainly hope you can find out what the problem(s) are and find ways to help your sister. Good luck!