Hi.
I had a urostomy done about 4 weeks ago, for aggressive/muscle invasive bladder cancer.
My only real problem at the moment concerns night bag system kinks/leaks.
During the day, i use either a one piece pouch or a one piece pouch with a leg bag (all Hollister). These options have been working great, with very few surprises/leaks (I did have a Hollister pouch fail during the day yesterday, which did confirm the need to always carry a spare and a change kit when away from the house).
However, 3 times in the last 1.5 weeks, I have had a leak/kink/failure in my night bag system. This night bag system attaches to the bottom of my one piece pouch. 3 times I have woken up with the night bag system tubing twisted far enough to kink the bottom of my pouch sufficiently to completely block all urine from entering the night bag tube, leading to a back-up and wet bed/pajamas/changing my pouch, etc. I believe this is because the night bag tube (and connected night bag) are a lot less flexible than my one piece pouch.
I have been underwhelmed by the lack of useful advice I have received my my wound/ostomy care nurse at my health care plan facility, although I do plan on circling back to them on this. If they gave any very useful advice on this, I missed it. However, based upon my experience, i assume this is a universal issue for all urostomy people, so I do think there must be useful solutions out there.
I did try a "Hold-N-Place Foley Catheter Holder Leg Band" to try to keep the night bag system tube aligned appropriately with the one piece pouch, to avoid kinking of the pouch. It worked one night, but failed the next. Not good enough.
I have requested a sample "urostomy night bag" from Coloplast, which comes with "anti-kink tube" and sounds promising. I got the sample, and my first challenge is that the Coloplast tubing system/size is not easily compatible with the Hollister tubing size. I will have to work on this.
in the mean-time, I have been back to using the "Hollister day bag" system with my one piece pouch. The Hollister day bag system is not enough to get through the night, and I would sure like to not have something like it attached to my leg while sleeping. However, it is working and not leaking/kinking/backing up.
Any thoughts on solutions to what has to be a universal urostomy issue are very welcome to this newcomer.
Thanks!