Ostomy

Many colorectal cancer patients will be faced with an ostomy. Few patients feel excited when an ostomy is mentioned;
however, we are here for you. We have education, tips, tricks, and support. Our community is full of ostomates who
are ready to help you, people who live a full life with an ostomy.

Ostomy

Many colorectal cancer patients will be faced with an ostomy. Few patients feel excited when an ostomy is mentioned; however, we are here for you. We have education, tips, tricks, and support. Our community is full of ostomates who are ready to help you, people who live a full life with an ostomy.

Types of Ostomies

It’s important to have honest and frank conversations with your surgeon before you undergo surgery, so you understand what to expect and how to prepare for ostomy life.

“Ostomy” is a term that encompasses all ostomies, but not all ostomies are the same.

Colostomy

With a colostomy, the end of your large intestine is hooked up to the stoma (the pink opening that’s visible from your abdomen). Here’s what to know about a colostomy:

  • The stool/output is more formed and solid – what you’re used to seeing when you poop.
  • Your body’s schedule of when to “go” may be sporadic.
  • Ostomy bags are typically closed. Once you “go,” you’ll need to replace the bag.
  • You still need to get colonoscopies.
  • Most often, colostomy placements are on the left side of your abdomen.
  • Colostomies can be temporary or permanent.
  • Some with a colostomy may receive a Gracilis Flap as a part of reconstructive surgery. Patients with this will not have a butt with a “crack.”

Ileostomy

For an ileostomy, the end of the small intestine is hooked up to your stoma. Here’s what to know about an ileostomy:

  • The stool/output is watery and pasty since it does not go through the large intestine.
  • Your body’s schedule of when to “go” is constant and may be more predictable.
  • Ileostomy bags are drainable. This means that you empty the contents in the toilet and can use the same bag for several days.
  • You do not receive colonoscopy anymore if your ileostomy is permanent.
  • Most often, ileostomies are placed on the right side of your abdomen.
  • Ileostomies can be temporary or permanent. Most often, a temporary ileostomy is placed when someone is recovering from colorectal cancer surgery.

Urostomy

Some patients whose cancer has spread to the bladder undergo urostomy. A urostomy removes urine from your body. Here’s what to know about a urostomy:

  • The bag is placed on your abdomen, like a colostomy or ileostomy bag.
  • Urostomy bags are drainable. You can empty it in the toilet and use the same bag for several days.
  • It is possible to have a urostomy bag and a colostomy bag at the same time.

Types of Ostomies

It’s important to have honest and frank conversations with your surgeon before you undergo surgery, so you understand what to expect and how to prepare for ostomy life.

“Ostomy” is a term that encompasses all ostomies, but not all ostomies are the same.

Colostomy

With a colostomy, the end of your large intestine is hooked up to the stoma (the pink opening that’s visible from your abdomen). Here’s what to know about a colostomy:

  • The stool/output is more formed and solid – what you’re used to seeing when you poop.
  • Your body’s schedule of when to “go” may be sporadic.
  • Ostomy bags are typically closed. Once you “go,” you’ll need to replace the bag.
  • You still need to get colonoscopies.
  • Most often, colostomy placements are on the left side of your abdomen.
  • Colostomies can be temporary or permanent.
  • Some with a colostomy may receive a Gracilis Flap as a part of reconstructive surgery. Patients with this will not have a butt with a “crack.”

Ileostomy

For an ileostomy, the end of the small intestine is hooked up to your stoma. Here’s what to know about an ileostomy:

  • The stool/output is watery and pasty since it does not go through the large intestine.
  • Your body’s schedule of when to “go” is constant and may be more predictable.
  • Ileostomy bags are drainable. This means that you empty the contents in the toilet and can use the same bag for several days.
  • You do not receive colonoscopy anymore if your ileostomy is permanent.
  • Most often, ileostomies are placed on the right side of your abdomen.
  • Ileostomies can be temporary or permanent. Most often, a temporary ileostomy is placed when someone is recovering from colorectal cancer surgery.

Urostomy

Some patients whose cancer has spread to the bladder undergo urostomy. A urostomy removes urine from your body. Here’s what to know about a urostomy:

  • The bag is placed on your abdomen, like a colostomy or ileostomy bag.
  • Urostomy bags are drainable. You can empty it in the toilet and use the same bag for several days.
  • It is possible to have a urostomy bag and a colostomy bag at the same time.

Barbie Butt/Ken Butt

Those with a permanent ostomy may have a “Barbie Butt” or a “Ken Butt.” This means they’ve undergone proctocolectomy surgery and their rectum and anus were removed and sewn up. Not everyone with an ostomy has undergone this surgery. However, it’s not reversable if performed.

Barbie Butt/Ken Butt

Those with a permanent ostomy may have a “Barbie Butt” or a “Ken Butt.” This means they’ve undergone proctocolectomy surgery and their rectum and anus were removed and sewn up. Not everyone with an ostomy has undergone this surgery. However, it’s not reversable if performed.

Blockages

Ostomates are inherently at risk for blockages and dehydration. A blockage occurs when your stool cannot pass through your intestines and out your stoma. Some foods may cause blockages, and adhesions from past surgeries may also lead to them.

A blockage can be very painful and life-threatening if not addressed quickly. If your output has slowed down or stopped, and you’re feeling pain and cramping throughout your abdomen and stoma area, you may be at risk of, or facing, a blockage.

Some patients attempt at-home strategies like applying heat, laying down, taking a walk, or drinking carbonated beverages like Coke, to get a blockage to pass. However if output continues to decrease, if you begin vomiting, and if pain increases, contact a doctor ASAP and/or visit the emergency room.

Blockages

Ostomates are inherently at risk for blockages and dehydration. A blockage occurs when your stool cannot pass through your intestines and out your stoma. Some foods may cause blockages, and adhesions from past surgeries may also lead to them.

A blockage can be very painful and life-threatening if not addressed quickly. If your output has slowed down or stopped, and you’re feeling pain and cramping throughout your abdomen and stoma area, you may be at risk of, or facing, a blockage.

Some patients attempt at-home strategies like applying heat, laying down, taking a walk, or drinking carbonated beverages like Coke, to get a blockage to pass. However if output continues to decrease, if you begin vomiting, and if pain increases, contact a doctor ASAP and/or visit the emergency room.

Physical Therapy

Physical therapy can be invaluable pre/post surgery. PTs can help safely strengthen the abs, helping to avoid hernias. Also, PT can be an early intervention to help break up some internal scarring (i.e. abdominal adhesions), which can be a source of blockages.

Physical Therapy

Physical therapy can be invaluable pre/post surgery. PTs can help safely strengthen the abs, helping to avoid hernias. Also, PT can be an early intervention to help break up some internal scarring (i.e. abdominal adhesions), which can be a source of blockages.

Temporary or Permanent?

Ostomies may be for a short-time or permanent, depending on your unique case.

Temporary

A temporary ostomy is typically placed when:

  • You’ve undergone colon resection surgery, and your colon needs to heal.
  • The tumor is high enough that the rectum and surrounding areas are clear of cancer.
  • The surgeon feels that you are “resectable,” meaning that there is a strong chance an ostomy reversal will be successful.
  • You don’t carry a genetic syndrome that would put you at risk for future cancers if you kept your colon and rectum.

Permanent

Some ostomies are permanent from Day 1, and others were placed temporarily but do not get reversed. Ostomies become permanent when:

  • Your rectum is removed during surgery.
  • Scar tissue and/or adhesions prohibit your surgeon from performing ostomy reversal surgery.

Temporary or Permanent?

Ostomies may be for a short-time or permanent, depending on your unique case.

Temporary

A temporary ostomy is typically placed when:

  • You’ve undergone colon resection surgery, and your colon needs to heal.
  • The tumor is high enough that the rectum and surrounding areas are clear of cancer.
  • The surgeon feels that you are “resectable,” meaning that there is a strong chance an ostomy reversal will be successful.
  • You don’t carry a genetic syndrome that would put you at risk for future cancers if you kept your colon and rectum.

Permanent

Some ostomies are permanent from Day 1, and others were placed temporarily but do not get reversed. Ostomies become permanent when:

  • Your rectum is removed during surgery.
  • Scar tissue and/or adhesions prohibit your surgeon from performing ostomy reversal surgery.

When should I call my doctor?

Your ostomy is new to you, and it can be a confusing time. If you aren’t sure if what your body is experiencing is normal, reach out to your physician. Also, if you experience any of the following, be sure to call your doctor:

  • Inability to maintain a pouch seal

  • Skin issues that won’t heal and 1-2 pouch changes
  • Separation of the stoma from the skin around the stoma
  • Changes in color of the stoma (should remain beefy red in color)
  • Changes in appearance or length of the stoma
  • Prolonged abdominal pain/persistent nausea or vomiting
  • Changes in output (2 days for colostomy, 8 or more hours for ileostomy)
  • Feelings of sadness or depression that will not resolve
  • Inability to find access to supplies

When should I call my doctor?

Your ostomy is new to you, and it can be a confusing time. If you aren’t sure if what your body is experiencing is normal, reach out to your physician. Also, if you experience any of the following, be sure to call your doctor:

  • Inability to maintain a pouch seal

  • Skin issues that won’t heal and 1-2 pouch changes
  • Separation of the stoma from the skin around the stoma
  • Changes in color of the stoma (should remain beefy red in color)
  • Changes in appearance or length of the stoma
  • Prolonged abdominal pain/persistent nausea or vomiting
  • Changes in output (2 days for colostomy, 8 or more hours for ileostomy)
  • Feelings of sadness or depression that will not resolve
  • Inability to find access to supplies

Ostomy Supplies

Ostomy supplies and changing routines will become one of the first and most important aspects of caring for an ostomy. It can take some time to find supplies that fit your body and lifestyle, and a changing routine too. Be patient with yourself and lean on others to help with suggestions and resources.

There is not a single “best” route to go when it comes to ostomy supplies because the choice is very personal. All products have pros and cons.

It’s very likely that the first ostomy supplies you use will be given to you from the hospital, and most hospitals have exclusive contracts with one of the product suppliers. If you do not care for the initial products, or you want to explore other options, that is possible once you get home.

Here’s a few things to know as you explore ostomy supplies:

All types of ostomies come with this choice. A one-piece bag sticks directly to your abdomen. A two-piece bag has a baseplate (also called a wafer) that sticks to your abdomen and the bag attaches to that.

Some bags are open at the end, meaning you can empty them and continue wearing the same bag. Others are closed, meaning once output goes into the bag, you’ll need to replace the bag to remove the output.

There are gray bags, clear bags, and neutral bags. Some bags clip to the wafer, others snap. There are big wafers and small wafers. There’s long bags and short bags. There’s convex and flat options. There’s some with filters and some without filters.

Less is more in the world of ostomy, but there’s a lot of products that can help you both manage your ostomy and feel comfortable. There are rings, creams, powders and odor eliminators. There are also bag covers, belts, and wraps. Don’t be afraid to explore what you need and ask what’s working for others.

Some people’s skin cannot tolerate certain ostomy supplies. Each brand uses a unique formula for their adhesives. If you try one brand and it irritates your skin or doesn’t fit the way you need, be sure to keep trying other options.

Carry a few extra supplies with you so that you can do a full bag change on the go if you need to do an emergency change. Don’t forget to include an extra change of clothes in the bag, too.

Reminder: All companies will send you free samples so you can try products before ordering them. Take advantage of these programs!

When you’re new to this world, it can be confusing. This is where an ostomy nurse comes in. Work with your ostomy nurse/clinic to explore products and request samples. If you don’t have access to an ostomy nurse, check out UOAA’s Virtual Ostomy Clinic.

Additionally, peer-to-peer education can teach you how to LIVE with an ostomy. There are many great online groups, social media accounts, and YouTube channels with tips and tricks from ostomates based on their lived experiences.

Ostomy Supplies

Ostomy supplies and changing routines will become one of the first and most important aspects of caring for an ostomy. It can take some time to find supplies that fit your body and lifestyle, and a changing routine too. Be patient with yourself and lean on others to help with suggestions and resources.

There is not a single “best” route to go when it comes to ostomy supplies because the choice is very personal. All products have pros and cons.

It’s very likely that the first ostomy supplies you use will be given to you from the hospital, and most hospitals have exclusive contracts with one of the product suppliers. If you do not care for the initial products, or you want to explore other options, that is possible once you get home.

Here’s a few things to know as you explore ostomy supplies:

All types of ostomies come with this choice. A one-piece bag sticks directly to your abdomen. A two-piece bag has a baseplate (also called a wafer) that sticks to your abdomen and the bag attaches to that.

Some bags are open at the end, meaning you can empty them and continue wearing the same bag. Others are closed, meaning once output goes into the bag, you’ll need to replace the bag to remove the output.

There are gray bags, clear bags, and neutral bags. Some bags clip to the wafer, others snap. There are big wafers and small wafers. There’s long bags and short bags. There’s convex and flat options. There’s some with filters and some without filters.

Less is more in the world of ostomy, but there’s a lot of products that can help you both manage your ostomy and feel comfortable. There are rings, creams, powders and odor eliminators. There are also bag covers, belts, and wraps. Don’t be afraid to explore what you need and ask what’s working for others.

Some people’s skin cannot tolerate certain ostomy supplies. Each brand uses a unique formula for their adhesives. If you try one brand and it irritates your skin or doesn’t fit the way you need, be sure to keep trying other options.

Carry a few extra supplies with you so that you can do a full bag change on the go if you need to do an emergency change. Don’t forget to include an extra change of clothes in the bag, too.

Reminder: All companies will send you free samples so you can try products before ordering them. Take advantage of these programs!

When you’re new to this world, it can be confusing. This is where an ostomy nurse comes in. Work with your ostomy nurse/clinic to explore products and request samples. If you don’t have access to an ostomy nurse, check out UOAA’s Virtual Ostomy Clinic.

Additionally, peer-to-peer education can teach you how to LIVE with an ostomy. There are many great online groups, social media accounts, and YouTube channels with tips and tricks from ostomates based on their lived experiences.

How do I order supplies?

You should be sent home from the hospital with enough supplies to last you a week or two, while you wait to place your first order. This is a good time to call the ostomy supply companies, like Hollister, Coloplast, and Convatec, and ask for product samples. If you have a home health nurse, ask your nurse to help you set up supply orders.

Most patients order their supplies online, through medical supply companies like Edgepark, 180 Medical, and Byram Healthcare. These groups all take your insurance information and coordinate billing and supply shipping. Your local pharmacy may also offer an option for ostomy supplies, and some larger cities have Ostomy Supply Stores where you can purchase in person.

You can order supplies directly from the ostomy companies if you choose. Some patients also order ostomy supplies off Amazon, although this can get very costly and if you order off Amazon, this will not count toward your insurance out-of-pocket maximum.

How do I order supplies?

You should be sent home from the hospital with enough supplies to last you a week or two, while you wait to place your first order. This is a good time to call the ostomy supply companies, like Hollister, Coloplast, and Convatec, and ask for product samples. If you have a home health nurse, ask your nurse to help you set up supply orders.

Most patients order their supplies online, through medical supply companies like Edgepark, 180 Medical, and Byram Healthcare. These groups all take your insurance information and coordinate billing and supply shipping. Your local pharmacy may also offer an option for ostomy supplies, and some larger cities have Ostomy Supply Stores where you can purchase in person.

You can order supplies directly from the ostomy companies if you choose. Some patients also order ostomy supplies off Amazon, although this can get very costly and if you order off Amazon, this will not count toward your insurance out-of-pocket maximum.

Are ostomy products covered by insurance?

Yes, ostomy products are considered “medical devices” and are covered under most insurance plans. You will need a prescription from a doctor for them (usually your surgeon who performed the ostomy surgery).

Your insurance carrier will have policies regarding their coverage which may include:

  • Deductible: You will likely have to pay your deductible first before the supplies are covered. After you’ve met your yearly deductible, you may have co-pays or co-insurance fees. Chat with your insurance company to find out if you don’t want a surprise bill.

  • Quantity: Your insurance plan may only allow so many products to be covered each month/quarter. If you run out, your doctor may be able to adjust the prescription. You’ll want to make sure that your insurance will cover the amount of your doctor’s prescription. If you don’t, this can add up fast.

  • Essentials: Your basic ostomy supplies should be fully covered by insurance, such as any bags, rings, or wafers. If you add additional supplies, like adhesive remover, paste, odor eliminators, or powders, these items may not be covered by insurance.

Are ostomy products covered by insurance?

Yes, ostomy products are considered “medical devices” and are covered under most insurance plans. You will need a prescription from a doctor for them (usually your surgeon who performed the ostomy surgery).

Your insurance carrier will have policies regarding their coverage which may include:

  • Deductible: You will likely have to pay your deductible first before the supplies are covered. After you’ve met your yearly deductible, you may have co-pays or co-insurance fees. Chat with your insurance company to find out if you don’t want a surprise bill.

  • Quantity: Your insurance plan may only allow so many products to be covered each month/quarter. If you run out, your doctor may be able to adjust the prescription. You’ll want to make sure that your insurance will cover the amount of your doctor’s prescription. If you don’t, this can add up fast.

  • Essentials: Your basic ostomy supplies should be fully covered by insurance, such as any bags, rings, or wafers. If you add additional supplies, like adhesive remover, paste, odor eliminators, or powders, these items may not be covered by insurance.

How do I find free ostomy supplies or donate my unused supplies?

Unfortunately, not everyone has access to affordable ostomy supplies, and not everyone’s insurance plan covers the amount of ostomy supplies they need. In this case, there are several “ostomy closets” around the country that can help.

If you’re ever in a situation where you need immediate, emergency access to ostomy supplies, go to the hospital, as all medical facilities should have a supply of products.

Here are few resources to look into if you need free ostomy supplies, or you’re looking to donate unused ostomy supplies:

Learn more about Complementary and Alternative Medicine (CAM).

Learn more about Complementary and Alternative Medicine (CAM).

How do I find more ostomy information and support?

Fight CRC proudly partners with the United Ostomy Associations of America (UOAA) to provide resources and support to patients with an ostomy. UOAA has a wealth of education, tips, and resources on every topic involving ostomy.

How do I find more ostomy information and support?

Fight CRC proudly partners with the United Ostomy Associations of America (UOAA) to provide resources and support to patients with an ostomy. UOAA has a wealth of education, tips, and resources on every topic involving ostomy.