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

Posted by .harp player @amberpep, Fri, May 15 4:20pm

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

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

REPLY

@amberpep I think the info that @katydid gave you is very good. I would also strongly recommend that you introduce her to MayoClinicConnect! There are so many groups and discussions that would be great fo her. I’m glad you’re her friend and want to help her. She’s very lucky

REPLY
@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

Jump to this post

This was an excellent reply and certainly gave you lots of information and very good advice. I have a colostomy and have had it for a year now. I have had quite a lot of trouble with having the bag stay on me. Mine was an emergency situation and due to the condition of my colon at the time the stoma is far from ideal. (flat and almost concave) Also, my skin is in poor condition all around the area due to my being on Prednisone for 2 years prior to surgery. I have had several visits with the Stoma nurse specialist and my equipment has been changed several times trying to find the right combination of barrier ring, flange and bag. Location is important if you have the luxury of choosing. After the fact it cannot be changed and bending over for any reason can be a real problem. I found that the manufacturer HOLLISTER has an excellent web site which was very informative as well and will send free samples. I fortunately live in Canada and after I was released from hospital, I had home nurses daily to help me for the first few months. They supplied me with the necessary supplies and equipment and my Government pays for it all. Don't be afraid to ask for help, it is out there.

REPLY
@bcstew

This was an excellent reply and certainly gave you lots of information and very good advice. I have a colostomy and have had it for a year now. I have had quite a lot of trouble with having the bag stay on me. Mine was an emergency situation and due to the condition of my colon at the time the stoma is far from ideal. (flat and almost concave) Also, my skin is in poor condition all around the area due to my being on Prednisone for 2 years prior to surgery. I have had several visits with the Stoma nurse specialist and my equipment has been changed several times trying to find the right combination of barrier ring, flange and bag. Location is important if you have the luxury of choosing. After the fact it cannot be changed and bending over for any reason can be a real problem. I found that the manufacturer HOLLISTER has an excellent web site which was very informative as well and will send free samples. I fortunately live in Canada and after I was released from hospital, I had home nurses daily to help me for the first few months. They supplied me with the necessary supplies and equipment and my Government pays for it all. Don't be afraid to ask for help, it is out there.

Jump to this post

Your response has prompted me to ask if anyone knows whether a barrier ring is necessary for skin health. We have had so many problems with leakage. My husband’s stoma is irregular in shape and slightly recessed. What has finally worked is a convex wafer and no barrier ring. We have begun to use the “Y” shaped barrier strips around the outside edges as well as the elastic belt and the pouch is good for three or four days. Now my concern is the irritated skin. I’m sure that if he gets even one lesion it will be difficult to heal.

REPLY

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.

REPLY
@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

Jump to this post

Katydid responded thoroughly, I would like to add a few thoughts. First the Gastro mds are wonderful but are not that familiar with nutrition’s impact on performance of ostomy. Please make contact with a well certified and educated nutrionist. The nutritionist will assess your diet and change things that may feel counterintuitive. I was told I could eat “ anything”. Wrong. After struggling with intermittent diarrhea, I was changed to a diet with minimal fiber, four small meals per day, no sugar and a chewable Centrum silver multivitamin everyday. Regarding leaks, always evaluate what situation you going into and regulate your intake accordingly, types of chairs that will be used etc. always carry a small e,mergency bag for the ability to continue activity. When applying wafers the area must be completely dry—leak while changing, clean and dry area again. We use sensicare wipes (2) and they have done wonders.

REPLY
@bcstew

This was an excellent reply and certainly gave you lots of information and very good advice. I have a colostomy and have had it for a year now. I have had quite a lot of trouble with having the bag stay on me. Mine was an emergency situation and due to the condition of my colon at the time the stoma is far from ideal. (flat and almost concave) Also, my skin is in poor condition all around the area due to my being on Prednisone for 2 years prior to surgery. I have had several visits with the Stoma nurse specialist and my equipment has been changed several times trying to find the right combination of barrier ring, flange and bag. Location is important if you have the luxury of choosing. After the fact it cannot be changed and bending over for any reason can be a real problem. I found that the manufacturer HOLLISTER has an excellent web site which was very informative as well and will send free samples. I fortunately live in Canada and after I was released from hospital, I had home nurses daily to help me for the first few months. They supplied me with the necessary supplies and equipment and my Government pays for it all. Don't be afraid to ask for help, it is out there.

Jump to this post

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.

REPLY
@katydid77

Your response has prompted me to ask if anyone knows whether a barrier ring is necessary for skin health. We have had so many problems with leakage. My husband’s stoma is irregular in shape and slightly recessed. What has finally worked is a convex wafer and no barrier ring. We have begun to use the “Y” shaped barrier strips around the outside edges as well as the elastic belt and the pouch is good for three or four days. Now my concern is the irritated skin. I’m sure that if he gets even one lesion it will be difficult to heal.

Jump to this post

Yes, the irritated skin can be very sore and lesions are so hard to heal. I have tried many different things and found nothing that really does the job. The less leakage you have the less irritation. The skin gets irritated from the stool and if you have found equipment that lasts you for 3 – 4 days. I say Bravo! I consider myself lucky if I go two. If I get two nights in a row, I don't wait for a leak or a fail, I just go ahead and change it. My motto is "It's easier to change than to clean up a mess". I use Hollister equipment ad I use a barrier ring. Each person must find their best combination.

REPLY

I don’t advertise products for the sake of advertising, but after 6 years struggling with leaks and skin irritation; the best thing I can recommend is Sensicare wipes. They say to use one, I use two and wipe the whole area, over stoma and everything and it reall helps.

REPLY

Thanks for the recommendation. We are already using the wipes and are considering the spray for more complete coverage. A nurse friend said they have used milk of magnesia to neutralize the urine. You let that dry (hair dryer speeds the process) then dab or spray on the barrier. Has anyone tried that?

REPLY

@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.

REPLY
@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

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY

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

REPLY
@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.

Jump to this post

@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?

REPLY
Please login or register to post a reply.