Ostomy: Adapting to life after colostomy, ileostomy or urostomy

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?

Interested in more discussions like this? Go to the Ostomy Support Group.

It didn't take me long to adjust to using the ostomy pouches, etc. I get support from husband in attaching the ostomy pouch to the stoma, and I still have not totally gotten the knack of doing it alone. But it doesn't bother me to wear one, except I have to be careful of how full the bag gets. Otherwise it can erupt and make one heck of a mess.

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Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

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Hello @sfedders and welcome to Mayo Clinic Connect. So sorry to hear about your mom. It is great that you have reached out for support and to connect with others as you go through this with her.

To start, you will notice that I have moved your post into an existing discussion on ostomies so that you can more quickly connect with members such as @engelee @katydid77 and @jfsbndr who have previously shared about leaks and may be able to share more with you about their experiences.

What cleaning protocol(s) are you using to keep the area clean? What was shared with you upon discharge?

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

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Is she using barrier strips around the bag? These helped immensely when I had the same problem. Also found that a magic bag heated in the microwave and applied immediately after changing the bag helped the seal.

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

Jump to this post

Very important to make sure that the surrounding area around the stoma is very dry before applying the appliance. Also, I had to switch products to find one that is relatively reliable. They all seem to link every now and then and some more than others. I have used barrier strips, but have not had much luck w/ those. Keeping the stoma area clean and dry before applying the appliance seems to work the best for me.

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

Jump to this post

@sfedders . My husband has a Urostomy but I’m sure all kinds of bags have problems with leakage. As others have said, the skin must be dry. We use a hair dryer on low heat, then apply Nasacort (otc nasal spray) to help protect the skin, then dry again with hair dryer. While doing all of that, hold the bag with seal under your arm to warm the seal. Apply the bag and hold it in place for at least 30 seconds.

Take heart —- everyone here is ready to help.

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@katydid77

@sfedders . My husband has a Urostomy but I’m sure all kinds of bags have problems with leakage. As others have said, the skin must be dry. We use a hair dryer on low heat, then apply Nasacort (otc nasal spray) to help protect the skin, then dry again with hair dryer. While doing all of that, hold the bag with seal under your arm to warm the seal. Apply the bag and hold it in place for at least 30 seconds.

Take heart —- everyone here is ready to help.

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Thank you. Great suggestions, I’ll give them a try.

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

Jump to this post

My husband had the same problems with his new colostomy a few months ago - it was leaking every day! We finally got an ostomy nurse who examined the failed seal and recommended a different kind of bag and belt system to hold it tight against his body - it worked wonderfully and still does, he's not had an emergency since. We also use extender seals for added protection, very easy. Don't despair, the trick is working with someone who will thoughtfully look at her situation and recommend the right appliance/system.

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@katydid77

@sfedders . My husband has a Urostomy but I’m sure all kinds of bags have problems with leakage. As others have said, the skin must be dry. We use a hair dryer on low heat, then apply Nasacort (otc nasal spray) to help protect the skin, then dry again with hair dryer. While doing all of that, hold the bag with seal under your arm to warm the seal. Apply the bag and hold it in place for at least 30 seconds.

Take heart —- everyone here is ready to help.

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I had problems with leaking and sore skin for a year. Finally supplied with convex seals.
I haven’t had a leak since using them. I hope this helps

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@sfedders

Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.

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@sfedders, how is your mom doing?

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