Looking for guidance from others who have experienced this. Briefly, I had a bad case of Radiation Cystitis along with hemorrhagic bleeding that sent me to the hospital multiple times for blocked urine flow due to clots, the last time being end of Jan 2023. After 20 sessions of hyperbaric oxygen therapy last year, and 50 sessions this year ending late March (second round needed because of recurrence), I have been completely free of any bleeding , even a tinge, since early May. I use a supra pubic tube and drainage leg bag, and manage ok with that, along with overnight bag. I am at the point of trying to get my bladder back to holding urine.
What I am looking to know is how others have managed traveling - I am itching to get back on a cruise ship, and then eventually on an airplane. What supplies do you travel with? Are there issues in flying with a leg bag? Any issues going through airport security? Do you clean the leg bags every night or do you use a new one each day? What do you clean them with ? ( I use a little bleach added to some water). Any other concerns or issues that arose from those who have done this?
Separately, has anyone done biking (bicycle riding) while wearing a leg bag or having a supra pubic tube / catheter? Issues? I am not looking to do a lot of miles, just perhaps 2 or 3 and will ask my doctor on this.
Appreciate thoughts - thank you.
Teddy
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Teddy28
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Hello, my step father travels often with a supra pubic catheter with no issues. He did have to explain to security what it was in the screening, but it didn’t really hold up the process. He carried all of his supplies in a carry on, and not in checked luggage. That could be a real bummer should luggage get lost!
I asked him and he says he changes his bag daily on trips. He also got the all clear to swim by his urologist which was surprising to me. He’s had it for years though, and manages to hide the bag in his swim trunks.
I say, if you feel well enough to travel… what are ya waiting for?!? I’ve traveled in a wheelchair. Wasn’t ideal, but wasn’t going to stop me. People travel with all kinds of medical devices and I see no reason why you can’t too. Be sure to ask your doctors about things like swimming.
Glad you ready to get back out there! Go have fun and best wishes to you. Do a QOL post when you get back. Journey on!
Thanks so much for your comments. It would be helpful to know what kinds of supplies your stepfather takes along, besides extra leg bags. And doses he have a favorite brand he likes? I am not entirely thrilled with mine.
Today is my one-year anniversary wearing a catheter. While it's been a life saver, I'm really tired of the hassle. Wore a leg bag through the airport last month while using a wheelchair.
To avoid the issue of leg bags, have you considered connecting a flip/flo valve to the catheter instead of the bag. I have had an SPC for 5 years and had a flip/flo valve connected for all that time. Makes things very easy. When you feel the bladder is full you just “flip” the valve and it is just like peeing normally except the urine comes out of the catheter rather than the urethra, The other major advantage is that it allows the bladder to fill and empty normally so less chance of atrophy with a permanently empty bladder.
Thanks for the link Teddy28, I have been using a plug but if I drop it in the toilet I would be SOL. Gonna try a flip n flow. Learn something from you guys every day
Travel is easy. Just got back from two weeks in London and Paris. No sweat. I use the flip-flow valve with the catheter secured by a Statlock patch on my upper thigh. It’s pretty much just like normal urination and keeps the bladder semi active. At night I use a 2000 ml bed bag attached directly to the valve. Empty in the morning, flush with a little tap water and hang for reuse. I toss it when I change hotels. If I need a led bag for some reason, I use the Hollister with an extension tube cut to get the bag to the upper calf. It has a very easy to use leg strap that makes for quick emptying. The 900ml leg bag also works for overnight, but might need a mid-sleep emptying. I use on when visiting grand children concealed under long pjs. Avoids explaining things in late night encounters. I consider the Supra pubic a convenience. I get 6 to 8 hours of uninterrupted sleep. Haven’t had that in years. Only had on airport question. A new ultrasound screening device in Paris picked up the valve. Easy explanation and on my way. I guess the new machine is designed to see plastic guns.
Keep traveling. It what life is all about. Feel free to pm with any questions.
Thanks for these comments, very much appreciated. I am wondering why you chose Hollister - I see those leg bags on Indemedical website for around $4.95 vs Rusch at around $2.00 or less, depending upon the size. Is there some advantage you perceive? I also use Statlock but secure the bag to my thigh, above the knee. Right now I am unable to store much urine in bladder due to spasms although am working towards that.
The Hollister has a strap system that just slips on and off very easily. The strap is also much wider than others so it can be tightened without cutting into your leg. It also has an easy to use valve so all in all I find it more convenient and worth the price. The straps can be reused so t he at saves some cost. The bag I use is no. 9805, 900ml. It comes in a package with straps and extension tube for about $10, but I like the Medline extension tube better.
I find wearing it on my calf much more comfortable and easy to empty when wearing traditional cut trousers.
Hollister also makes an adhesive remover for the statlock glue that is very gentle and lets you reuse the same location. Alcohol irritates my skin. I know I sound like a Hollister rep, but I’ve tried a lot of different products and these two are just better than the others I’ve tried.
I have to add—we travel a lot. Planes, cars, trains, and buses with no problems. Don’t let a suprapubic tie you down. Life is too short. You’ll find products and a routine that work for you and it will become seamless.
Papa1, I took your advice and bought a few Hollister leg bags. They work well and seem very durable. I clean it every night with water and a tiny bit of bleach. How often do you change and use a new leg bag? More importantly, what is their mode of failure - meaning does the valve start leaking or does the bag rip, etc? I keep checking the bag but so far it is still good after 3 weeks. I let an old one soak today with 50% vinegar water solution. Let me know.
I usually discard after a week or so, but they are pretty durable, so longer seems fine from a durability standpoint. I’d worry about infection after a longer time, so as long as you’re keeping it clean and no uti, go for it.
Papa1 - i have done some traveling and plan to do more. Just wondering how you manage on overnight flights with a leg bag? Appreciate any tips. So far I have avoid those by taking day flights but expect at some point to do overnight.
Glad you asked. My present method is to use a Bard Flip-Flo valve secured in a Statlock catheter stabilization device. The valve lets me urinate normally every two to three hours. I place the statlock so that the whole assembly extends to about 2” above the knee. That way I can wear shorts and use the restroom without unzipping.
You have to make sure your bladder doesn’t overfill, so if it has been a few hours and you haven’t had an urge to empty, do so anyway.
An alternate is a good, large leg bag. Hollister makes a 900ml model that attaches nicely to the calf with comfortable elastic straps and an extension tube. I use it for travel sometimes and the assembly makes for a bed bag if disconnected from the leg straps. The size may not make it for and eight hour overnight, but four or five hours is easily handled. Also it’s a bit pricey and you need long pants.
My urology clinic at Johns Hopkins supplies me with the valves and statlocks, but they do not stock Hollister bags, so I have to buy them from a medical supply house.
Any 2000ml bed bag will work for overnights in a hotel.
Thanks, so basically on an overnight flight you have to wake up when your bag is full and your bladder is backing up? Or does your full bladder wake you? Any risk of leakage when your bag and hose are full and you're still sleeping?
Unless you somehow figure out how to use a bed bag on a plane, five hours is the best you are going to do. You don’t ever want to let your bed or leg bag fill to the top. That risks back flow and infection.
I tip my hat to anyone who can get more than five hours sleep on an airplane without something or someone waking you.
If your bladder gives you clear enough signals to let you know it’s full and to wake you, that’s fine. Otherwise use a timer. My limit is three hours. Yours may be different.
You might want to discuss all of this with your catheter nurse.
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