1. < Ostomy

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

Posted by Barb @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

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katydid77 | @katydid77 | May 22, 2020

@bcstew, bear in mind my husband has a urostomy — not a colostomy. I’m sure most things are different for you. It is hard when reading the product descriptions which ostomy it is intended for. That is something the industry needs to correct.

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Barb | @amberpep | May 22, 2020
In reply to @katydid77 "My husband recently had his bladder removed due to cancer and has a stoma. Yes that..." + (show)
@katydid77

My husband recently had his bladder removed due to cancer and has a stoma. Yes that is the same thing as an ostomy. She will have a urostomy vs. a colostomy (colon) and iliostomy (small intestine). She will have a new way of life but hopefully she will be cancer free. The stoma will be made from live tissue and will have to be cared for. She will have a collection bag located somewhere on her lower abdomen. Exactly where will depend on her individual anatomy. Old scar tissue, skin folds, weight, all have to be considered. You might tell her if it can be located below her belt line it will be easier to bend over to pick up something off the floor. Little things like that which we take for granted become a challenge with an ostomy. My husband plays golf and teeing up the ball has become a real challenge. There are other challenges like urine leakage at the most inopportune times and skin issues around the stoma but they can be dealt with and she can live a full life. Encourage her to give herself time. The first six months will be a learning period and a time of regaining her strength and developing stamina. Tell her not to hesitate to ask for help from her doctor and her stoma nurse as well as the manufacturer’s rep and the supplier of her supplies. She can have a nurse come to her home for a few weekly visits to help her learn what to do. It is not always possible to find an experienced nurse in your local area. If the first one does not seem to know enough do not hesitate to ask for a different one.

You did not say if she is on Medicare. Medicare covers the cost of the visiting nurse and all of her regular supplies. Free samples of the supplies are available from at least three manufacturers and they can be requested on line. We have settled on Coloplast but try them all to see what works for her.

I hope I have not given you too much info. She is lucky to have such a caring friend. Best of luck, Kay

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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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2 replies
Barb | @amberpep | May 22, 2020
In reply to @singalsk "Five years ago my brother had bladder cancer and was going to be operated by his..." + (show)
@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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Barb | @amberpep | May 22, 2020

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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1 reply
katydid77 | @katydid77 | May 23, 2020
In reply to @tobydeligdish "I had an emergency colostomy last March. I would have looked into different options if possibly...." + (show)
@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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1 reply
katydid77 | @katydid77 | May 23, 2020
In reply to @amberpep "This is probably a dumb question, but since it's the bladder that is involved will the..." + (show)
@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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katydid77 | @katydid77 | May 23, 2020
In reply to @amberpep "So then she will have a visiting nurse once she gets home? One of her daughters..." + (show)
@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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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 24, 2020
In reply to @amberpep "So then she will have a visiting nurse once she gets home? One of her daughters..." + (show)
@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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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 5, 2020
In reply to @becsbuddy "@amberpep I really applaud you on your wish/plan to help your friend with her post-op care..." + (show)
@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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tobydeligdish | @tobydeligdish | Jun 13, 2020
In reply to @katydid77 "@bcstew. Might I ask where you had your surgery. Was it a private clinic or one..." + (show)
@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?

Jump to this post

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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