I have an ileostomy and am very familiar with the struggles we ileo's deal with, but out of curiosity, I'm interested to know what struggles urosomates go through. How do you care for and empty it, etc.? Is it a challenge getting the bag on? I mean, will it start going like it does for us at changing times? Do you shower with or without the bag, etc.?
Hi - some differences with urostomies. Leakers seem to be a little more prevalent and 3-4 days is the average change cycle. The urine can really mess with your skin if you don't keep an eye on things. Lots of squirting at change time, so morning is best. Bag on/off in the shower is optional; personally, I always go without everything. There is a valve at the bottom of the pouch for emptying and connecting to a night bag. More info available if you need it. Best
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My best friend has one, and it does go at unpredictable times during changing, and she gets mucus output too. Her stoma is more oval-shaped, so it's hard for her to cut the barrier. I told her once that my bag popped from the top when I had something to eat, and it went through too thick. She had no idea what I was talking about. She couldn't picture it. She doesn't worry about diet or blockages but does keep hydrated. She also gets the acid burns like we do. Tape on the outside of the barrier base is a must for her, and powder for the stoma. She talks about a darkness, almost like bruising sometimes, that happens around the stoma if she doesn't dry it well, not just the redness. She tries to air it out as much as she can during the changes. She also changes twice a week, and she showers with the bag off on change days. She always has to use an overnight bag, which we don't always have to do. She uses a little silicone and plastic connector, which sometimes can get unconnected, and that's where a lot of the problems can come from, and she doesn't use a barrier ring. Another thing is that her end of the bag has the valve with release, so she has to be careful that it doesn't turn unexpectedly; it must be turned in place right. She cleans her bags out with white vinegar, and she can reuse the night bag maybe for another week or two weeks, but she doesn't reuse the small bags. After three days, she changes those. We've had a lot of discussions and compared notes, giving each other extra adhesive and barrier wipes and tape. We both use the same base plates from the same company. She has really helped me through this so much. I think she's on year three or four with hers, and I'm on like month seven with mine. I never imagined that I would be in a similar boat, but life changes. I've been so grateful to have her for support. I was really crazy sad for the first few months, and she has really been by my side.
Urostomate here :-)
Indeed you want to stay dry from leakages, as they eat away the skin like a fire...
We have zero control on urine output, so it drops or squirts when it likes. I use a tampon during changes, so it absorbs most. I change in the evening as in the morning I look like a well (but it depends from person to person).
Have gone up until 1 week with the same flange, change the bag daily, and the night bag I wash and reuse up to one month.
I always need stoma powder under the flange and put safety tape if it's warmer, as the band-aid-like part of the flange tends to lose stickiness a lot more than the colloidal internal one...
Waiting for my first summer to see how I handle really hot weather and beach going.
Mucus reduces with time but it can increase again if your stomach is upset, or if an infection is brewing...
Thanks for all the great information. I like learning about things. I can imagine the liquid is quite a challenge. Thank the Lord we are all alive and healthier due to our ostomies.
I've had a urostomy since I was nine and I'm now 64. I change my bag every three days. I shower at night and make it a rule not to drink a couple of hours before showering so I don't urinate as much. I take my bag off before showering. I also use a barrier ring and strips to prevent leaking. I do use a night bag so as not to put pressure on the ostomy.
