Seeking fellow urostomates to discuss challenges and victories

Good day:

I really enjoy this site and all the great people here who all share many similar challenges and joys. As a urostomate, I do not come across many others here. Would like to chat with others who pee in a bag about our unique challenges and victories. Cheers!

Hi, I also have a pee bag. I am an out-of-the-box thinker, so I invent things to make life better. I have a few things I do for the security and easy use of the night bag that I can tell you about.

Things I use and you will need for this to work.

1. A Bard 150719 or 150180 Leg bag (Dispoz-a-bag). In lieu of this, you may be able to find a cap for a brass fitting at the hardware store that fits perfectly as well. (The leg bags cost about $12.00, I think??)

2. Bard night bag 153504 or similar

3. Hollister 18413 Urostomy Pouch (Mate to a Hollister 14505 flange or similar.)

So I was at my daughter's place visiting overnight and had an accident where the night bag clip didn't or wasn't closed. Of course, you can imagine how I felt - not very happy - actually very embarrassed. So I set out to fix this so it could NEVER happen again.

Here is what you do ---- get the leg bag and open it up and retrieve the little green cap they have in the package. It fits right on the drainage spout at the bottom of the night bag. Once on, it makes little difference if the spring clip lets go as this is tight enough to hold liquid in the bag and not on the floor (rug?). The green rubber cap will not fit in the plastic housing originally designed for this end to go in. That is no problem, just stick one side of the green plastic clip into the plastic housing and it is secure enough, no problem.

That was easy, but there is more to make things better. -The night bag comes with this conical pointy plastic piece that also has a place for a nurse to take a needle sample. Cut this all off close to the plastic thing with a pair of sharp scissors. So you now just have the hose on the bag. The Hollister day pouch is a two-part system; the pouch is attached to the flange part that tapes onto your body. We are only interested in the small piece of hose with a white plastic connector attached to it which comes in the pouch part of the assembly. (Box 18413) Get this wee hose and connector and using a pointy pair of sharp scissors carefully cut the hose completely off of the connector. Throw the cut hose away. Insert the connector into the end of the hose by huffing (lubrication is being applied by huffing) on the ends of the connector and the hose together and slide the connector into the hose on the night bag. This is a good tight fit and this connector will not accidentally come off of the hose.

Now you can connect the night bag to your pouch without fear of it ever coming off during the night. Sleep well!

Ok, all is good, but wait there is more. You will want to seal off the end of the night bag with the connector on it during the day after you have rinsed it out. The thing to do is destroy a pouch (new or old, your choice) and take the bottom piece off that has the valve on it. It will clean up if you keep working on the removal of all the pieces of the pouch. Close the valve and snap it onto your night bag for cleaner and confident storage during the day. No air, smell, or insects can get in or out, nice!

OK, that is the hints for today.

I had my operation nearly 5 years ago to remove my bladder. I have traveled all over the non-third world part of the globe since. I run a home laser cutting business out of my house. I enjoy life!!! This was my third life-terminating escape, so I'm three times lucky and work on enjoying life with my wife of 48 years.

Jim

Hello. I also lost my bladder to cancer. I am new at this, 10 months, so getting used to this new way of life. I have traveled several times and was wondering what you do for an overseas flight? I have to get up so often that I would like to figure something out. For instance, do you drink less? I know that hydration, of course, is important. I also feel that everywhere I go, I look for the bathroom just to see where it is.

I feel very lucky to be alive. Any information regarding your travel and exercise would be appreciated. I do walk several miles a day and trying to get my strength back, and it is working but slower than I would like! You are running and scuba diving. That is amazing. So good to read this. Thanks. Laura.

Hi Laura: Nice to meet you. Yes, we are all lucky to be alive after all we went through as ostomates. Carpe diem :-) I also look for where a bathroom is :-)

Regarding travel: I don't know what type of diversion you have, but for myself, I make sure I empty the bag before getting on board, then just sort of wing it (hah) during the flight. It rarely fills to the danger point, as I try to empty once it reaches no more than half full. No problems yet after 16 years of travelling with my "bud". Yes, I tend to drink less on a long flight, though.

Everyone is different, of course, but I was biking, swimming, playing racquet sports, diving, etc. 2 months after surgery. The first few months were adjusting both physically and psychologically, but by getting right back into things, it made the transition easier and quicker.

When travelling, I ALWAYS carry with me (carry-on) at least a couple of complete sets of barriers and bags, and a night drainage bag. My checked-on luggage and I occasionally taken separate trips for a few days. Just got back from St Kitts and Nevis, but my luggage went to Antigua for two days. Once travelling to London, luggage didn't show up for three days. and same has happened on the way to Cuba a few times.

Hope all this helps. Where are you considering travelling overseas to?

Bruce

Hi Trifinisher, one other trick is when you go to bed, buy a bucket big enough to place your overnight bag in. In case of a spill, all you have to do is empty the bucket and save the carpet. It worked for me a couple of times, thank God. You can open the hangers on the bags and clip them on the side of the bucket. I got my bucket for 99 cents and it fits perfectly. Good luck. Auttoman

Hey auttoman:

Great suggestions, thank you for taking the time to inform us. Luckily, I've never had such an issue. I do use a bucket, though, just in case :-)

I also never travel without all my supplies in a medium-sized camera case. Last trip to Australia and NZ, I carried enough for two months in this carry-on. I don't trust airlines to get my luggage where it is supposed to be, and if they were to screw up, I would really be screwed!!

I have never used a pail and did away with the mattress protector because I found it hot to sleep on, even under the sheet. The rubber cap described above will give 100 percent confidence for me. I have never actually had a bed flood! Lucky me!

I have had a urostomy forever and I don't use an overnight bag, although I do have a plastic sheet on my mattress in case of a leak. But this rarely happens as over time, you will recognize when your bag is needing changed. When traveling abroad, even long haul, I've never restricted fluids as there is a toilet on board and I take enough so if needed, I can change every day. I find extreme heat can cause it to need changed more often, but I tend to use a Convatec two-piece which has worked for me. But I do know that no two stomas are alike and it's trial and error to find what works for you.

Hi Jellybean82.

I was wondering if I really had to wear the night bag. I am a very light sleeper usually, but not always. Sometimes (rarely) I don't wake up all night. Considering the pouch only holds 500 ml and I may have three times that overnight, I thought it prudent that I stay with the night bag. I have a hernia but not so large it requires intervention. I wear a belt during the day.

Did you see my earlier post where I described the things I have done to make the night bag 100% dependable and secure? I had an accident at my daughter's home and was embarrassed to tears. I swore that would never happen again and figured out how to accomplish that objective.

Anyway, it is late and I need my beauty sleep, LOL.

Jim

Hi Bruce. We will be traveling next year and will be with family. Since the operation, I have traveled several times to Baltimore and to Puerto Rico, so I am getting there. A nurse had told me to use a leg bag, but I am small, so I can't imagine having something connected to my leg on an overnight trip. I also do not want family members to even think about my situation. So I will drink less on this trip, and I will carry my supplies.

Do you have any weight restrictions? I have been advised by the surgeon to not lift more than 10 lbs, and I want some sort of strength training. I miss working out and need to figure something out. I do walk all the time but need to change it up. Thanks, Laura