Bladder cancer: Is a stoma the same as an ostomy?

Posted by .harp player @amberpep, May 15, 2020

I have a very dear friend who has been diagnosed with bladder cancer. She’s had one “scraping” and then about 3 weeks later another. Then this week she had 2 days of chemo. and that’s it for that week, then 2 the next week, and 2 the following week. From what I understand there is one more 2-day round of chemo. and then they will x-ray it, and probably do surgery. She will then have a stoma ….. is that the same as an ostomy? The surgeon told her the opening would be at her belly button.
Can anyone tell me what this is like? Anytime someone says cancer, I fear for them.
abby

@singalsk

Five years ago my brother had bladder cancer and was going to be operated by his long-time Georgetown University Urologist. But his son was a fellow at Mayo Rochester and advised him to get it done there. The surgery was excellent and he was able to keep his bladder. He is cancer free and has become a believer in Mayo and goes there for everything. I would strongly recommend Mayo for bladder cancer treatment.

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Hi singalsk …. she is using Johns Hopkins, so I feel she's in the best hands around here.
abby

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This is probably a dumb question, but since it's the bladder that is involved will the stoma, will it just be emptying urine or also bowel movements?
abby

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@tobydeligdish

I had an emergency colostomy last March. I would have looked into different options if possibly. I now also have a prolapse stoma and a hernia. To finish my problems my stoma, my stoma protrudes and it is the largest imaginable. It is difficult to bend down. I have tried most of the companies and found Hollister to be the best for my condition. I have never had leakage, but do change the bag once a day.

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@bcstew. Might I ask where you had your surgery. Was it a private clinic or one of the larger hospitals? Do you know what caused your prolapse?

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@amberpep

This is probably a dumb question, but since it's the bladder that is involved will the stoma, will it just be emptying urine or also bowel movements?
abby

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Unless there are other complications it will just be urine. However,the stoma will be made from a piece if the small intestine so it will always contribute bacteria to the urine. Hygiene is most important..

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@amberpep

So then she will have a visiting nurse once she gets home? One of her daughters is an RN, but works in the Pediatric Dept. for children with cancer, so I don't know how much she can do. Her other daughter is a hairdresser, so I don't know how much time she'll have. I had planned to go up (I'm in VA and she's in MD) to help when she got home, but now I'm wondering if it just might be more than I can handle.
abby

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.harp player, it is hard to say if you can handle things immediately after going home after the surgery. If you can be there while she is in the hospital you will be shown how to care for the stoma. This is not easy surgery to get over. There are emotional adjustments as well as the physical ones. Her RN daughter probably has dealt with this in children and would be the better candidate for at least the first week or two. A visiting nurse would be advised if the daughter cannot do it. Of course, someone else would need to be there as well since the visiting nurse is there for a short visit and it may not be every day. There are various websites that explain what will take place if you do a search. This a time that you can not have too much knowledge.

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@amberpep

So then she will have a visiting nurse once she gets home? One of her daughters is an RN, but works in the Pediatric Dept. for children with cancer, so I don't know how much she can do. Her other daughter is a hairdresser, so I don't know how much time she'll have. I had planned to go up (I'm in VA and she's in MD) to help when she got home, but now I'm wondering if it just might be more than I can handle.
abby

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@amberpep I really applaud you on your wish/plan to help your friend with her post-op care from a difficult surgery. To help your friend prepare for this surgery, I would suggest that you both do some brainstorming and planning now. Since she is going to JohnsHopkins hospital, you could find out from the hospital if they have a wound clinic. The nurses there are usually certified in caring for ostomies and should be able to help your friend. You might also talk with the home care nurses at the hospital to see what kind of follow up care they can provide. Insurance covers most care so she will want to take advantage of everything!
If her daughter can be there the first week or so, it would be best. Caring for a new stoma can be difficult. The best things you can do for her is cooking, driving, and all the small but important thing to help her feel better.
Do you think you think you can help your friend make these calls?

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@becsbuddy

@amberpep I really applaud you on your wish/plan to help your friend with her post-op care from a difficult surgery. To help your friend prepare for this surgery, I would suggest that you both do some brainstorming and planning now. Since she is going to JohnsHopkins hospital, you could find out from the hospital if they have a wound clinic. The nurses there are usually certified in caring for ostomies and should be able to help your friend. You might also talk with the home care nurses at the hospital to see what kind of follow up care they can provide. Insurance covers most care so she will want to take advantage of everything!
If her daughter can be there the first week or so, it would be best. Caring for a new stoma can be difficult. The best things you can do for her is cooking, driving, and all the small but important thing to help her feel better.
Do you think you think you can help your friend make these calls?

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@amberpep I’ve been thinking about you helping your friend after cancer surgery . The best thing you can do is support your friend. Phone calls, good jokes you’ve heard, notes by snail mail and email, anything you can do from home. It would be fun for her to get mail and to look forward to phone calls. Ask @lioness Where she gets all of her coloring pages. They would make great cards! Good luck and have fun with it!

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@katydid77

@bcstew. Might I ask where you had your surgery. Was it a private clinic or one of the larger hospitals? Do you know what caused your prolapse?

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I had my emergency surgery at New York University Hospsital in New York City. From what I read, a prolapse happens very often and then a hernia. Even if you have reverse surgery, you can still end up with a stoma and prolapse. A reverse surgery is a very lengthy procedure and at my age I do not think I could survive.The skin is very thin at that point.

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I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy … 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" – I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player – abby

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@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy … 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" – I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player – abby

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@amberpep, I'm glad to get an update about your friend. You'll notice that I moved message to this discussion that you started earlier. I did this so that members like @katydid77 @becsbuddy @singalsk @engelee @bcstew @hodagwi @nene22 @john0416 @tattrigoo who are familiar with bladder cancer and stomas can offer first hand knowledge and experience.

You can get some information here from the American Cancer Society
– Urostomy https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/surgery/ostomies/urostomy/what-is-urostomy.html

But I agree that it really helps to talk with people who have gone through the experience of getting a urostomy. Members here can help answer your questions about what the surgery is like. Where they make the incision, the recovery time and how long until one learns how to change the bag.

How is she doing on chemotherapy, Abby?

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@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy … 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" – I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player – abby

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@amberpep This is a very kind and considerate thing, to get some information on your friend's situation. This will certainly help you to understand what she is going through, and also help her, knowing she has a friend who is so concerned for her! How is she feeling today, and are you both in the same town to be able to offer support?
Ginger

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@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy … 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" – I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player – abby

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Hello, @amberpep . I am very glad to hear that your friends bladder cancer has not spread. That’s really good news. Is she doing alright with the chemo?
I found this information on bladder removal. Recovery can take awhile since it’s major surgery. She can expect to remain in the hospital for 4-5 days and during this time she’ll learn how to care for the ureterostomy. The hospital will probably set up for homecare. Nurses will come to the house and continue to teach her.
https://www.mayoclinic.org/tests-procedures/cystectomy/about/pac-20385108
You can be invaluable help to her by listening and supporting her. Talk about all the fun things going on and forget the current news. Facebook is a great way to communicate. You have sounded so positive lately that I know you’ll be good for her!
Please feel free to ask us more question. Becky

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