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Hi, I'm looking for information from people that have had permanent urine bags

6 days 19 hours ago #58148 by Cynthia

Welcome to our community but I an sorry for your families problems. I saw your post earlier but I had to give it some thought. But lets go through this a step at a time.

1. She should not have any problem getting supplies check with her insurance but they should pay for her supplies. She will get a prescription from her doctor and get it filled. Either she will find a local place or have it delivered mail order. I use a company for my catheters that is internet based and the preferred provider of my insurance, I give them a call about every three months.

2. We have known people here that even did mountain climbing and race care drivers who had bags. I would say after a period of adjustment the bag will not in any way stop her from walking. As a matter of fact walking is the best thing she can do for herself as she recovers from her radical cystectomy.

3. She will be adjusting to her bag as she recovers from surgery. The bag or appliance as some call it comes in a lot of configurations and finding the one that works for her may be a simple thing or a bit more complicated but it is doable. Ask her doctor is she can have an appointment with an ostomy nurse before she has surgery. This will give her a chance to meet them before she needs them and ask her questions. After surgery this is the person who will help her learn how to take care of her bag and stoma, her go to person on that issue. They together should be able to come up with a game plan for training and a good adjustment. As for urine escaping the bag that is the reason you work with the ostomy nurse to make sure this does not happen. But the truth be told it probably will happen a few times at first and there will be frustration but you have to remember that it is part of the adjustment.

People adjust well to what ever type of diversion they get but with your MIL’s blindness it will be more challenging. Tell her to give herself time to heal and with time she will do much better than than she imagines. And we are here if she needs us just give us a yell we are here for your family.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 week 2 days ago - 1 week 2 days ago #58128 by Alan

Welcome. We are always sorry for the reason to be here. I have not had a cystectomy so I will not be a lot of help here but, I wanted to let you know your post is being seen and hopefully some with experience will chime in. I know a few that have the urostomy bag and lead very productive and enjoyable lives. While it will take some time I believe your Step Mom will conquer any barriers albeit it has to be more difficult being blind.

Pat yourself on the back being a caregiver! It is a very important piece of cancer. Keep posting as you go.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 week 3 days ago #58124 by hucklemento
My stepmom was recently diagnosed with bladder cancer and she has decided not to do chemo. Because her cancer is 100% confined to her bladder, they can remove it, along with other lady parts, but she will have to have a urine bag.

The complication is that she is blind. She's about 70 now. She is terrified about what the bag will mean, as she pretty much lives for walking about 2-3 miles a day, and she's worried about getting all the supplies, what to do if she gets urine all over herself and other things like that.

If anyone has any information they could share, tips, how it is to live with one, anything about exercise-related issues, or just really anything would be great.

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