Seeking Advice on Urostomy Pouches and Supplies

New urostomy with ileal conduit one month ago. Looking for suggestions on what type pouch to order and why. So far have been trying the pouches sent thru the companies in kits that arrived on return from hospital after surgery. Have not placed a supply order yet and not sure what supplies to order and from where. Do you have to get an order/ prescription from the surgeon each time you place an order? Also on occasion have had a problem with the tubing twisting at night when I'm sleeping and attached to an overnight bag so it doesn't drain properly. TIA

Welcome! 

Urostomies are their own thing for sure. Lots of things I want to say but I will pare it down. Please feel free to ask follow up questions.  

1) I am using Coloplast sensura mio but I successfully used Hollister in the hospital. The exact system will depend on what works best for you. Everyone is different. 

2) How much does your stoma stick out? Mine is basically at skin level but ideally it should be significantly above skin level like an inch or so (not sure exactly how much). My ostomy nurse said urostomies are often low. If yours is low like mine, you may need to try a convex baseplate. 

3) If you are having leak problems, try a barrier ring. This was a game changer for me. 

4) A lot of the ileostomy appliance advice on this site will resonate for a urostomy. They often have very liquid corrosive output which is exactly what urine is.  

5) When attaching the night bag, make sure they tubing is straight. You can twist the tubing at the place it attaches to the ostomy bag to straighten it out. 

6) The tubing that comes with the Coloplast night bag is better than the others I've tried. I think it's worth a try. It is more flexible and I've had fewer problems with twisting than I did with the Hollister set up. 

7) My ostomy nurse set up my first supply delivery. It sounds like you are on your own. There are several suppliers you can work with. I use Edgepark and I have no idea if they are good or not. Others may chime in on this.

As an example; With Edgepark, I have given them my Dr's information and they request the necessary prescription if needed. They also bill my insurance directly. The site is a pain to navigate and I'd suggest you call them for help locating the exact products when you are ready to order the first time. For subsequent orders you can select items from your past orders fairly easily. 

8) Start with free samples. When ready to order, you'll order everything you use in a change, flange and bag (if 2 piece) or bag with attached flange (1piece), barrier rings, adhesive remover (if used), barrier wipes (if used, probably a good idea to have some on hand), flange extenders (if   used), anything else you use or want to test further. Keep quantities small at first because insurance will keep track and you don't want to have a bunch of stuff that doesn't work and be unable to order new stuff. 

There aren't a lot of people with urostomies that are super active but I'm hoping some more will help. I'm new, only 5 months so there's still a lot I need to learn. 

Thanks for your response. I am working with a home health nurse and she said she can help me place the first order. Still trying to decide which pouch is best so trying a smaller order at first is a great idea. Finding the one piece to be easier at this time. So far not too much problem with leakage. Stoma is approximately 3/4 inch out from skin level. Have been using the Coloplast night bag and agree the flex tubing works better than the other with the stiff tubing.

Have used Coloplast for 12+ years with good results, especially the one piece pre-cut. Tip on the night bag tubing. I use  1/2 " strip of elasticized cloth with pre-cut slits for a double button then fasten the tube to my leg just above the knee. Cloth is available at fabric store or online. Best 

Does fastening the tube to your leg help prevent twisting?

Words of Encouragement from Ostomy Advocates I Hollister

Yes... Absolutely. Just make sure you don't fasten too tightly and cut off circulation. Result is comfortable plus you avoid twists / tangles with the tube.

Thanks Bryce will try the fastening to the leg and see if this helps with the twisting. Also thank you for the recommendation of coloplast products