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Travel advice needed for heavy leaker

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Posted 2/10/2014 2:48 AM (GMT 0)
Had my RALP on 1/17 a little over 3 weeks ago, all went well, surgeon said the cancer was contained and he saved 1 nerve completely and had just a little damage on the other from cauterization. Cath was pulled 16 days ago. Doing the kegels my doctor recommended, now up to (55) 5 times a day - how many does it take to be a kegel master I wonder. PSA coming up in a week and a half - fingers crossed.

So all is good right, problem is I have no control of my bladder, none. OK - when I sleep on my back I have control for half a second until I stand up. Using about 5 or 6 Depends a day, have figured out strategies for around the house or on short trips to the store. Now however it is time to take longer trips and I'm a little nervous. So far have been able to work from home but my job really requires me to fly all over the country, stay in hotels, and spend a lot of social time with people. Have to start traveling again in 3 weeks and am very nervous about it.

Does anyone have some good advice for public restrooms, discrete disposal of used pads, airplane restrooms, and just general coping on the road? God willing I will get that sphincter working like a champ soon but it sure seems like a long way away right now.

Thanks for any ideas or coping strategies,

PSA 5.0, Gleason 3+3, 3 of 20 positive at biopsy, stage I clinical, stage II post surgical
Posted 2/10/2014 3:34 AM (GMT 0)
some ideas, bring a zip lock bag to use when there is no place to put them, bring some plastic grocery bags to discretely carry to trash can.
"they" do not recommend this, as it is seen to not aid or possibly delay your recovery of urinary control, but I found that a condom style catheter and leg bag great for when you don't want to or can't deal with the mess and at the same time be sure that there is no leaks.
Google "external catheters" and there are lots of places to buy them. I like the Hollister Extended Wear and a UroCare ~500cc leg bag using the wide elastic straps. THe bag has button holes in it and the straps have buttons. The strap around the calf can be the most uncomfortable part of this. Order several sizes the first time to see which will fit the best.
Good luck on the recovery, maybe you should think about going to a physical therapist specializing is incontinence ?
Posted 2/10/2014 11:39 AM (GMT 0)
I worked for a year wearing and changing pads. Probably 6 months with a Depends, lined with a Tena pad and changed it a lot. The pad was for the drips and the Depends for secondary protection. I went to work,and social gatherings with this combo,drank alcohol and leaked, but nobody could tell from the outside. At 1 year was 98% continent. It was a drag, but these are the scars we carry. Regards Inkhorn
Posted 2/10/2014 1:17 PM (GMT 0)
Welcome aboard Ragman and welcome to the other side!

As has been said, use a pad inside the Depends and change the pads out frequently. It is easier than changing out Depends and less expensive. I put the pads in a zip lock sandwich bag and when I changed them, I put the used pad in the bag and zipped it closed for disposal. Wear dark pants in case of an accident, leave the light colors in the closet for the next few months. Watch what you eat and drink. No spicey food, caffeine, citrus drinks, etc. they don't help the matter. You may not have to drink as much water now as you did after your surgery so you might cut back on it. Try to go to the bathroom on a regular basis even if you don't feel like you have to go.
The afternoon time is usually the worst. Your body begins to tire and you have less control so you might plan less activity in the afternoon.

I have been a big leaker, in fact I am still leaking 18 months later. I am taking Toviaz for OAB to see if that works. If not, I may have to take the next step, back under the knife.

Good luck to you. I hope the next few weeks and months are better for you than what I went through.

Bill from Florida cool
Posted 2/10/2014 6:26 PM (GMT 0)
Thank you and thank you, this is great advice. My uro is probably a very skilled surgeon but not so great in counseling and advice. He says don't worry most people have continence in 6 to 12 months - not a lot of encouragement there.

This forum has helped me through the whole process from the first high PSA through selection of a treatment method. Also my name "ragman" refers to my working in the textile waste business and is not a nod to the many pads I use.

So far my take away points are; drink less (give up that cup of coffee), use a pad inside a depends, carry plastic bags, take frequent bathroom breaks even when you don't feel the need, get an external catheter as a last resort, and don't give up hope or get depressed, others have been through much more trying circumstances.

Thanks and more suggestions are welcomed
Posted 2/10/2014 7:16 PM (GMT 0)
A few more suggestions:

Move your wallet to a side pocket and keep a spare pad in your back pocket at all times. People will assume the bulge is your wallet.

The main advantage to wearing Guards (pads) inside your Depends (incontinence underwear) is that you can change a pad without taking off your shoes in a public rest room.

The first couple of times you make the dash from the stall to the trash can in the men's room can be embarrassing but you will quickly find that no one notices and no one cares what you throw away.

The small lemon-scented wet wipes that fast food restaurants give you with fried chicken or barbecue are nice to have in a pocket, too, late in the day when you are not feeling particularly fresh.

When you shop for pants, take bottled water with you into the dressing room and accidentally 'spill' a drop on the hem of the pants. Look for pants where the color change when damp isn't noticeable.
Posted 2/11/2014 2:48 AM (GMT 0)
All of the above are valid.

I use black doggie waste bags for the pads. If the bag gets pulled out by accident, you just forgot one after walking the dog. Explain a ziplock. And no one is going to poke at a doggie bag in a trash can. Yes, I work in a high security environment, and yes, they check the trash lest someone be smuggling out records at some facilities.

And in the end, incontinence cost me my travel job. Sucks.
Posted 2/11/2014 4:10 AM (GMT 0)
Not sure if this is helpful or not, but it seems one would want to be as dry as possible before entering a security check area when flying.

www.infowars.com/hes-wearing-a-diaper-tsa-agent-humiliates-cancer-victim/
Posted 2/11/2014 5:15 AM (GMT 0)
I've flown quite a bit in damp pads and it's never been an issue.
Posted 2/11/2014 8:09 AM (GMT 0)
I am in the same boat, RALP on 11-12-13, still no control, I travel almost weekly for work, every other week for sure, I am in sales and spend hours in planes, in rental cars and on my feet at trade shows 6-12,hours a day, and visiting account calls. It is not fun, nor easy. I have done everything, walking, kegels PT, etc... Still not much improvement. I have tried the slip on cath, but have had leak issues due to tubes coming on hooked from bag, condom slipping off etc, not a great option for me. So I have eneded up using a clamp, doesn't hurt, can fly without, limits the leaking, and pad changes, I wear inncontence underwear with a pad inside, if get wet most times it's just the pad, have leaked through a few times, and tried without clamp and end up in a wet situation, no easy way around it. I always have two extra pads with me and full depends and pants etc near by, really is a pain, and will probably end up ending my travel job, just no hood way logistically to travel like this. Without the clamp I wouldn't be able to function. Hope to improve but doesn't look like it will be anytime soon. Pad disposal is a pain at times and does suck much easier than full depends and removal of she's and PSA pants good luck.
Posted 2/12/2014 11:32 PM (GMT 0)
More great ideas and sharing. Have purchased multiple pairs of dark black pants, did a run through today with guards inside depends (makes for a big package but great protection). Tomorrow its to Walmart for lemon scented wipes and doggy bags.

Your ideas and stories are a huge help as I start my journey. In fact I even held on for about 3 minutes after getting up this morning, first positive development to date!

Thanks again
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