Radical Cystectomy Surgery: Appliance Insights Needed

For the guys.. I'm having radical cystectomy surgery in December. They will also remove my prostate and seminal vesicles. I've never had any issues with sex before, but am concerned. Any insights would be appreciated.

How about appliances. 1 piece versus 2 piece. My gut says a 1 piece should work fine for a urostomy. No worries about the sealing ring. Any thoughts?

Good luck on upcoming surgery. I have no clue about your other questions.

Prayers for a speedy recovery!

I hate to be a "kill-joy", but I believe I have had the same operation. Just think about it for a minute, and you should have had this talk with your doctor, not me. It is not good news. When your bladder is removed, which is directly where your penis is connected, they in fact cut the inner end of your penis off. This, my friend, cuts a nerve which is responsible for erections. They will be a thing of the past. You can still have erections, and if you are so inclined, there are medical things they can do, like graft a piece of bone in it to make it stiff, but it would always be stiff. My wife and I have not had intercourse for 12 years.
Sorry for the bad news, and why in hell did someone other than me not tell you sooner.

PS: I was 68 when I had my operation, so it really wasn't a big problem because I had already lost most of the ability to get a good erection by then. Now I'm a very healthy 80-year-old who, along with my loving wife, enjoys life.

Hi, I'm back again! When I had my operation 12 years ago, I received very little info on how to look after myself. It was a rough go of it, I tell you! I eventually wound up with a pre-cut 2-piece system from Hollister, which worked ok and I got 3 days between changes of my appliance. I did this for eleven years. Times changed and Hollister invented "CeraPlus". It costs more but is way more economical because I now get 7 days between changes and have gone 8 days twice, but I'm happy with 7 days vs the 3-day. On top of that, the CeraPlus is way more comfortable. Here are the Hollister product numbers I now use, and I would not go to a one-piece. The Barrier ring is a 11505 and the pouch is a number 18413. Your numbers will likely be different because of the size of your stoma, but be sure they are from the same series of product and you will be happy.

PS: In 12 years, I have only had one problem with the pouch leaking at the joint seal, and it was totally my fault because I did not "snap" it together properly. A couple more points - 1. Don't get the see-through pouch...you know what urine looks like and it doesn't dry as well as the beige one. 2. Use a small hair dryer to dry the whole thing off after a shower or hot tub or swimming etc. I got a very sore (eventually bleeding) rash on the top side of my barrier ring before I started with the hair dryer and no problem since.

I can give you more info anytime you like. I do a good thing with my night bag which you should know about, but this is getting long in the tooth.

Thanks.. lots of good info. Keep it coming. I'm interested in the night bag thing. I haven't slept all through the night in a lot of years and think I'll like it again..

Night bag and how to change it to assure no accidents. I get a Bard # 154002 Urinary drainage bag from my suppliers. I used to get a different number, but what I do has not changed.

1). There is a plastic thingy on the end of the hose... use a pair of scissors and cut it off and discard it.

2). There is a green plastic clip held on the hose by a green elastic band. Remove and discard this clip.

3). There is a shoelace kind of string, cut it off and discard it as well.

4). There is a big plastic thingy for hanging the bag on a medical bed frame, feed the hose through it and unbutton it from the bag and discard that as well.

So now you have the bag stripped down to the bag and about 4 feet of attached clear plastic hose... perfect! Bard also makes a leg bag, which costs about 12 or so in this part of the world. If you buy one of them, there is a green-colored rubbery cap with a tab sticking off one side. You need only the cap, and it is the most important part of all this operation.

NOTE: if you do not want to spend the 12 for this cap, the alternative is... Go to your friendly hardware and look for a brass fitting that is 3/8" and it will have a blue plastic cap on it to protect the threads. It will fit and do the job nicely.

The Bard night bag has a drainage system with a metal clip to act as a valve... DO NOT TRUST THIS VALVE SYSTEM. I had two very embarrassing accidents at night due to this valve popping open somehow. Hence, I dreamed up this system which has never failed in 10 years or so.
5). Put the green leg bag cap or blue 3/8" cap (from the brass fitting) on the end of the Bard drainage valve, now it will never leak as it has double protection. Clip one side of the valve with the cap on it, to the side of the place where the valve end was for stored originally. Not great but it works.

6. I use a Hollister 2-piece system for my stoma, as I believe it is easier to center over my stoma when I can see what I'm doing, which you cannot do with a one-piece system. The pouch is a number 18413. You need to destroy one of these pouches by removing the valve at the bottom of the bag. Take some scissors and cut it off the bag then clean all the wee parts from the bag off it. You now have just the plastic valve.

7). In the box of 10 pouches, there is a little clip thing that has a 2" piece of hose on it. Take a sharp pair of scissors and cut off the hose without damaging the clip where the hose connects. (There was a different and better clip thing originally but they changed it in the last couple of years, but this should also work I suspect.

8) Get the clip and the hose on the bag wet or just huff on both of them. Stick the clip into the 4-foot hose securely. Now you have your night bag with a clip on the end of its attached hose. Perfect! That clip will clip onto the bottom of the pouch you will wear 24/7 for a week so every night you will clip onto your night bag and open the valve on the pouch. You are now all set for a quick and easy to use night bag system that is 100% safe.

9). Lastly... the valve you removed from the bottom of the 18413 pouch is used to close off the night bag during the day to keep the bugs out or smell in etc. I use about three of these valves. As you see the valve and the clip and the green or blue cap can all fit together. So I do fit some together for spares and for travel... I have traveled all over the world for 15 years with this system and no problems.

I will send another message about travel on the next part.

Jim

Traveling the world with a urostoma after bladder and various parts removal.

1). Buy a camera case from Walmart that is about 15" long, 8" wide and 8" deep, with outside pockets on both ends and one side.

2). In the big side pocket you can put a night bag or two fixed up as described in my last article. In one end put your disposal bags and in the other input paper towels separated and folded to fit.

3). In the center main section you can store many barrier rings and pouches along with other supplies like .......Baby terrycloth washcloths, small mirror with a handle, spare clips and valves as described in my last article. I also store a fine-toothed comb (used after a pouch change to pull the hairs out from under the barrier ring. I'm a tad hairy and they keep pulling and ouching all day so I use a comb and pull them out during a change of pouch). I also have a 1.5" long section of 2" clear 1/4" wall that is a slightly flexible suction hose for pressing the center of my barrier ring as soon as I put it on during a change. I always have a small hair dryer (one for home and one in this camera bag), for drying the stoma area before applying the barrier ring and after my daily showers to dry the bag and general area. Lastly, I always travel with support belts made by New Hope. I have both 3" and 4", I'm not sure if they do anything to help my parastomal hernia or not, but they make me feel more comfortable and safer on a long plane or bus ride.

4). NEVER PUT A PAIR OF SCISSORS OR FINGERNAIL FILE etc. in this camera bag as the airport people will confiscate them. I have traveled accidentally a few times with items in a metal glasses case that they would take but were not able to identify by X-ray, lucky me. There is no need to risk getting caught.
5). This carry-on camera case is now your lifeline, DO NOT EVER LET IT OUT OF YOUR OR YOUR WIFE'S SIGHT!

I have traveled to many places in this world with this camera bag and it has worked absolutely GREAT!

Jim

I had my prostate, bladder, and lymph nodes removed. It is possible that you will regain the ability to have sex, although there will be no ejaculate. You can experience the muscle contractions associated with sexual climax.
As far as a one or two-bag system - to each his/her own. The ring closure for a two-piece really is not a leakage issue for me - I always double-check. I like being able to adjust the bag to horizontal (or close to horizontal) for nighttime to drain into a night bag on the side of my bed. Some people keep it vertical. Also, if there is a bag issue, in my humble opinion, it's easier to resolve with a two-piece.
Good luck

Hi there from New Zealand. I've just had my 1-year anniversary for the same operation as you're about to go through. My bladder, lymph nodes, and prostate were removed. I was given the option at the time to have a bladder rebuild, using intestine but opted for the bag and happy I did. As for sexual function, I read that the erection can return but takes up to 36 months, if it does. I'm at about halfway to being back to normal. The only advice I can give is to keep on with stimulating it. I truly believe if you don't use it, you'll lose it.
I really hope things work out well for you in the upcoming future. Take care, be positive.

Thanks. I decided against the neobladder, too. I just couldn't see myself catheterizing. And from my research here and other places, the bag really doesn't have to limit you.

I'll let my wife know she's gonna be busy for the next 1 to 3 years.

So my wife and I had a talk with the surgeon before the surgery. We told him we had an active sex life and wanted him to do whatever he could to preserve it.

He took extra time being careful around the prostate and nerves that are needed for an erection. It cost me blood and 3 really bad days right after surgery. But, the results were pretty amazing. Things are working. Not quite like before, but I'm only a little over 6 weeks from surgery. I got a prescription for Viagra. He said it should make things like they were before and I may not need it in time.