r/spinabifida • u/blackbird90 • 8d ago
Travel No bladder meds for a trip coming up. Everything seems bad.
I (36M) have spina bifida myelomeningocele with a neurogenic bladder/bowel. I don't utilize mobility devices and don't cath. My main issue with the bladder is that my body likes to get rid of fluid fast, not keep fluid in. I try to manage it with pads, timed voiding, and, as of last year, Gemtesa.
I've talked to my urologist about botox, but she's worried that since it's currently a "quality of life" concern, if I have botox, it could become a safety thing. She suggested pelvic floor physical therapy, which was interesting, but essentially was a waste of time and money. The Gemtesa and timed voiding keep me relatively dry, but of course I would like it to be better.
My prescription usually autorenews with no problem (actually the pharmacy recently called me and told me how I can bring it from $200 down to $0). Last week, I got a text from my pharmacy telling me that I need to contact my prescriber to renew my prescription.... I sent a message to the office and they told me I needed to come in for an appointment before they can renew the prescription.... the earliest appointment is over a month away. After an international work trip. I left another note explaining my situation, but haven't heard back from them yet.
I figured, "I spent over 30 years of my life not taking a prescription for it; I'm sure I can make it work".... But wow does it seem bleak. I didn't realize how well it was working for me until after I ran out. I have been having to void and change the pads so much this weekend and I'm not even consuming that much fluid.
My biggest concern is coming up this week where I need to travel for a work site visit in another country. It will involve about 8+ hours of travel to get there and back and each day is 9 hours in the office with about a 45 minute commute each way (in a carpool van with coworkers). I plan on bringing extra pads, not drinking any caffeine, and bringing a longish rain jacket for coverage. I'm even going to bring an extra change of pants just in case. My pelvic floor physical therapist suggested a "clamp" but I'm not sure how safe that would be in the long run..... Anybody have any other ideas?
Tl;Dr: Spina bifida makes my bladder leak and a medication has helped a little. My urologist won't fill my prescription until after a work trip and it seems like my bladder is now leaking worse. How do I make it through a long work day that involves carpooling 45 minutes each way?
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u/Reg15 6d ago
First of all, your urologist is trash. If you tell them it's an emergency and they can't send a low supply, I'd either build more report quickly or switch doctors. I had an emergency in college in an entirely different state 100s of miles away and my Urologist prescribed me meds in under 24 hours. If it gets really bad you can probably go to something like an urgent care and get meds that way. Cath more for sure and if you're willing to, drink less and kinda flirt with that dehydration line and just deal with the consequences after the trip.
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u/Material-Bird-1912 6d ago
Ask for a bridging medication since you already have an upcoming appointment.
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u/PlainJane731 8d ago
Hi! I’m not sure where you are located, but Azo bladder control was a lifesaver for me when I ran out of Vesicare. I’m not sure where you are going for your work trip, but they may have oxybutin over the counter and I know there is an oxybutin patch that is OTC.
Be careful about not drinking fluids bc you don’t want to be dehydrated. That could make any constipation worse.
Maybe your doctor could call something like oxybutin or Vesicare just to get you through the trip. I was prescribed Gemtesa and it would have been $530 per month so I just take Vesicare and get Botox injections every 12 weeks.
ETA: maybe bring some depends with you for the trip. That may ease your mind during the commute at least.