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

3 years 7 months ago #59026 by sara.anne
I had to edit your post to remove personal email information. Sorry we need to do this, but for legal reasons we cannot have personal identification/contact information posted.

Thank you for posting....your information will be helpful to many others!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 7 months ago - 3 years 7 months ago #59024 by cancersucksbigtime
Hello. I am coming on to this site a bit after the fact, but I can share my experiences with the bags. I had my bladder removed almost 4 years ago and it has been quite an adjustment.
First of all, I have had ongoing problems with leakage. Fortunately, I have a superb ostomy nurse at Fox Chase Cancer Center in Philadelphia named Tina. She knows everything !!

I have tried a number of different products, and I have found, for myself anyway, that Coloplast products work best. The company is excellent in terms of support, and I even have my very own consultant who has suggested a number of their products to try. They always send free samples when I request them, and I will be a Coloplast customer for the rest of my life.
The ostomy bags I use are one piece Sensura Mio. They are comfortable and reliable. I also use their overnight collection bags that attach easily to the ostomy bag attached to my stomach!
It took quite some time for me to find the right appliances that work. It is a process, and as Tina, my nurse says, take it in baby steps.
If your mother-in-law has as good an ostomy nurse as I have, she will have the best support and direction she could possibly want. I wish her well, and please feel free to ask me.

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4 years 2 weeks ago #58271 by RByrd
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.
The following user(s) said Thank You: Alan

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4 years 1 month 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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4 years 1 month ago - 4 years 1 month 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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4 years 1 month 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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