Question from SledEd

Dear Sled (I just like the name)
We all are with you as you approach the big day. As you can see, my post has no list of procedures at the bottom. I just don't know how to do it and I don't know the names of the procedures. I never had time to learn (diagnosis 7/02/08.. 2 robotic surgeries during July; and on 8/08/08, a new neo bladder!) I am sure there are others out there who have a wealth of experience and advice but are technotards like me. You will find that we are an amazing group. We talk about everything, nothing is off limits! Things that you find ambarrasing to discuss, have already been discussed.

When I first went to my urologist, they gave me a gown and sent me to a changing room. I undressed, put on the gown, and returned to the examination room, where they quickly took off the gown and started the exam. When I asked why they made me change in a private room and then strip me naked in 10 seconds, they said "You are new here and the first time we give you a shred of privacy... You will find that there is no dignity, or shame in the urology dept"

This site is secure in the knowledge that we are all in this together. We are either waiting for, in the process or have had, various treatments or surgeries. We have all had different experiences and fears. As you proceed, don't think about what is appropriate, everything is.

As for the sheets. Get cotton, and a mattress pad, and stock in Depends (look for some of the new male pads) and be sure your partner realizes this fountain is not controllable situation. My wife NEVER made me feel self-concious about bed wetting and my angst was minimal. This was a BIG factor in my mental recovery. Even embarrassing bodily functions became a light hearted activity.

I am now 15 months out, and JUST getting nightime continence, but sometime I leak, and I don't sweat the small stuff. I am still here and my doctor told me "there are a surprising number of people out there wearing bladder control pads under business suits"

Keep your eye on the prize.... keep your sense of humor...DON'T sweat the small stuff....make fun of it!!!

George

P.S. My other reason for liking the condom catheters so much is that I had prostate issues YEARRRRRS and was waking up every 1 to 1.5 hours. Being able to use the condom catheters and sleep straight through the night was so wonderful that I just didn't want to mess with getting up once or twice a night.

I have about 800-1000 cc of output during the night and sometimes as much as 1200 cc.

Mike

Ed,

While I do use condom catheters, I'm not sure I'd recommend using them from the start.

My reason is that it is soooooo nice and sooooo easy that you don't really train yourself for night time continence. So many people are able to train themselves for night time continence that it is certainly worth trying. I think it's around 90% of men with neobladders acheive night time continence.

Every now and then I think about trying to wear the pads and stuff and set the alarm to get up every few hours but even my wife says "why bother?".

It's not a big deal for me to use them but I would recommend only using them intermittently after the surgery. It's frustrating and a pain to be all wet and wear the depends and such so wearing the condom catheter attached to catheter bag is a nice occasional break from that. Another trick I use is that I buy the 18" extension hoses and hook that up to the catheter bag. Leaves more room for rolling around in bed and you can just toss the catheter bag on the floor instead of messing with clipping it on the mattress or night stand or whatever.

For those that are interested in condom catheter information, feel free to ask. I get the ones with adhesive (not the ones with the band you wrap around). Already have enough problems that I don't want to cut off what little blood flow I have!


Mike

The V shaped Tenna's are very good. At night I use them with a depend. I "mount" the guard way off center to the right because I am a side sleeper so it can catch any leakage.

I am at a point where I don't need the other pads anymore and spillout accidents are fairly rare. Not quite at the point where I am comfortable with ditching the Depends yet.

In the beginning I used the Tennas during the day but no longer need them. I just use them at night.

I have another very thin cup type pad that I use with regular underwear during the day. Can't think of the name off hand but am only able to get it from the internet. If you don't like buying this stuff, this place will deliver to your home

I am 18 months into my neo. Recovery time is pretty individual. For me, the first 6 weeks w/o the catheter was the hardest. Control built very slowly and I was using the heaviest industrial strength stuff I could buy from the local medical store. I was also sleeping in a Lazy Boy chair covered in disposable pads. My costs in pads almost looked like a car payment. Obviously, it does get better, albeit much too slowly for my taste

Mikes use of a penis catheter looks like a real good idea to me in hindsight. You may want to consider that in the beginning at least.

LeeH

What can I say I agree with everything Mike and Cynthia said.

I also get hot from the bed protection pad. Since treatment brought on early menopause I did need anything adding heat. I am thinking of sewing a large pillowcase to put around the pad to see if that helps. If anyone has other solutions I would love to know.

Webs