Hi. Saw your query and wanted to provide my experience. I had a cystectomy 8 years ago following cancer with tumors only in my bladder. Every time they did a TURB, at the next 3 month check, the tumors were back. I have a urine bag that I change every 2-4 days. More often than that irritates the skin. Your stepmom will need a lot of support when she starts using bags. For the first few weeks, nothing worked more than 2-3 hours. I was extremely frustrated, but kept trying products. I order from Edgepark and use Coloplast supplies. You will find many, many sites that sell, but fewer that deal with insurance. Companies like Coloplast and Hollister, and the supplier companies will provide free product for her to try. They are very good at matching your need to a product.
As her body recovers she will be able to resume any activities she did previously. I walk 2-3 miles everyday and on alternating days I also ride an exercise bike. I keep a bag with supplies, dry undergarments and a change of clothes in my car. I also always grab and wet a couple of washcloths and throw them in a ziplock bag and put it in my go+bag. I had a LOT of accidents in the beginning when I was getting used to the bags and I was still trying to find the right bags. But I rarely, rarely ever have an issue 8 years in. Your stepmom will probably require a lot of support during this early time period, but once her stoma settles in, she should have no problem changing her bags and being able to judge when it’s time to empty. The best thing about the bag is that I no longer have to worry about dirty toilet seats. I just whip out the valve at bottom.
I also don’t get up and go to the bathroom all night. I purchased a couple of night jugs that come with tubing that has a multiple number of attachments, one of which will fit her bag opening. Once you are plugged in, you are good for the night. If I’m staying in and just reading or napping, I will hook it up during the day.
I initially tried two piece bags. One piece attaches to the skin around the stoma, and a bag is snapped onto it. I found a concave product that is one piece. This is what I use now, and would probably be ideal for your stepmom. I also have some curved pieces that I attach to my skin and the edges of the bag, for more stability. I keep a roll of paper towels in the bathroom to help dry my skin around the hole when I’m changing bags. Limit your fluids for an hour or two before bag change time.
I know this is a lot of jumbled up information but hopefully she will glean some tips from this. The hospital where I had surgery had a WOC nurse who ’helped’ me, but she actually didn’t have enough experience to be helpful. My urologist referred me to a WOC nurse (Wound, Ostomy, Continence) at UNC-Chapel Hill hospital who was my salvation in terms of using the right product and applying it correctly.
If I can answer any specific questions I will be glad to talk to you and/or your stepmom.
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