So this is where i am

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Hi guys, ive decided to ask for your help.
I am an 8 time survivor of cancer. I have Lynch Syndrome which makes me genetically predisposed to many different cancers.
Because of all the surgeries ive had the tubes from my kidneys have been damaged. I have painful stents and i am totally incontinent.
I have really not found a good diaper. I use one kind over night wigh a booster pad and another for during the day. Im constantly wet. This makes me not want to get up and do anythimg. Im constantly plagued by uti's.
Im considering going back to having nephrostomy tubes put in. Is there anyone in this group who can shed some light on this? I also have an illyostomy and a peg tube to aspirate my stomach. Thank you gor giving me a place to come and talk.

 

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Im thinking that you are a true fighter and survivor. I give you my sympathy for what you have endured but also my respect.
Im hoping others on this site might be able to offer some good advice.
I do know there are external catheters that may offer you a break from diapers along with 3 different surgeries.
Have you considered those options?

 

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I've not tried the newest exterior catheter, but did try an earlier version with no luck. Surgeries are out, no one wants to go in there because I have a lot of adhesions. Thanks for your reply.

 

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Sorry.
I should have assumed that you would have looked at those options.
You are definitely an inspiration.
I really don't think i could have handled what you have gone through

 

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Not much to offer from experience but Northshore has been a great help in a variety sturdy diapers choices
You are welcome here!

 

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Hi Graphicedge,
I had robotic prostatectomy in January and was concerned about driving with the leakage I was experiencing back in the early Spring. We have a fifth wheel and like to go camping. Driving without being able to stop very often did concern me a bit so I checked into condom catheters and found one make that was pretty good. It wasn't "perfect" every time, but it did take away a lot of my anxiety. The make is Hollister Everyday. You have size choices and the adhesive was really quite good. Good luck!

 

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You wish to sleep dry and perhaps the Afex system would be of help. My husband has been overnight dry for three weeks in a row and we consider it a miracle. A jock strap with a cloth pouch holds a receptacle in place to secure the penis within. A hose attaches to the receptacle and directs pee into the collection bag we keep in a plastic bucket on the floor by the bed. The company offers a cleaning solution to clean and prevent UTIs. Learning to use the system efficiently meant some wet nights. Our bed is protected with two waterproof covers and then several layers of soft pads. I buy Afex from onlinemedicalsupply.com. The initial investment is perhaps more costly than recurring costs of diapers but the pieces are washable and reuseable.

I love you guys and gals in this forum; you are welcoming and kind and caring and helpful. You have guided and encouraged me in understanding incontinence. Stepping up to help Graphicedge is once again what you all do best.

 

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There is a similar system for women

 

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I am 13 Months post radical prostatectomy surgery. I am still 100% incontinent. I have had urethal bulking which didn’t work. I have tried AFEX which is ok maybe lying in bed. I wore it to a restaurant and was so embarrassed that I dont go anywhere public or anyone’s home. I can’t go to church . I also have CHF and take 40mg
Lasix everyday which adds to my problem . My Urologist want me to wear a penile clamp . It’s obvious that he has never worn one.
I have found Men’s Liberty external catheter works best. I use extra waterproof tape and lower leg bag.
I still have major accidents but not like other devices.
I apologize for rambling but I hope I have helped.

 

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I’ve used Afex shortly after they came out and it worked well. Just in case anyone else here wanted to try it.

 

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Thank you to everyone who tried to help. I am a woman, so some of the suggestions are not really going to work for me. Does anyone have a nephrostomy tube? I know that everything has its pros and cons. Can someone maybe suggest a better diaper. I use Dry Direct at night with a booster pad and a Tena Intimates during the day. Both leak. I will look into Alex to see if it is a possible solution for women.
Again, thank you for all of your input. Its just so good to have people who go through the same struggles to talk to.

 

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Hi Graphic edge there is a mechanical external device that is for women in abed that is said to be a very secure way to manage night incontinence. Noninvasive
JRPOORMAN can you tell her what it is your company did work for them
LEEC used 8t in hospital
It's in the threads afew times I cant remember the name

 

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Hi MayMay,
It’s called purewick and is from BD Medical.

 

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There should be vendors or healthcare suppliers that carry it.

 

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Thank you Jim i can never remember the name.
Graphic edge, this machine has been a great external wick away product for bed use according a a member who used it in hospital and might be of help. Its a gentle vacuum that sit outside the body and sections urine into a container.

 

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Hi@graphicedge, you are a true warrior for what you have endured during your treatment. There are many wonderful brands of diapers out there that will not leak or better said absorb better and last for hours. A couple of really good ones I could recommend you are BetterDrys, Rearz inspire and Abena Abriforms. I'm in diapers 24/7 due to my severe urinary incontinence and currently use these brands with great success, hope this helps in any way.