Living with an Ostomy - Fight Colorectal Cancer

Living 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.

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.

Ostomate Questions: Answered!

Ostomates have a lot to navigate: how to care for a stoma, how to find the right ostomy supplies and order them, how to change an ostomy bag, what to eat and what to avoid, how to stay hydrated, how to find clothing that works with a bag, how to be intimate, and so on. Elizabeth Rauh, MSN, APRN, CWOCN from Northwestern Medicine, and Fight CRC Ambassadors and ostomates Kimberly Holiday-Coleman and Michael Stern as they tackle some of the most common questions both new and seasoned ostomates ask.

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.

All Things Ostomy

In this webinar, Joanna Burgess, BSN, RN, CWOCN presents an informative webinar on living with, or preparing for, an ostomy. Joanna shared insight and advice from her professional work as a wound, ostomy and continence nurse (WOCN), but she also draws from her personal perspective from living with an ostomy.

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.

Being Active with an Ostomy

We sat down with stage III survivor and ostomate Julie Brown to talk about what it really takes to live confidently with an ostomy. Don’t miss her practical tips on staying active—as a mom, a wife, and a working woman.

 

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

Read Kimberly's Story

Before being diagnosed, Kimberly was experiencing symptoms but did not trust her body. It took her seven months to receive her stage II colorectal cancer diagnosis in July 2015. She then received a lifesaving ostomy in November 2015, which she named “Toodles.”

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:

One-piece vs. Two-piece

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.

Open vs closed

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.

Lots of options

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.

Products & Accessories

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.

Sensitivities

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.

Emergency “Go” Bag

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.

 

Julie’s Tips for Accepting an Ostomy

Julie Brown, a stage III survivor and Fight CRC Ambassador, wants people to know what she wished she learned sooner: Being open with a community of fellow survivors can empower you to feel more positive about your body.

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.

 

Julie’s Tips for Accepting an Ostomy

Julie Brown, a stage III survivor and Fight CRC Ambassador, wants people to know what she wished she learned sooner: Being open with a community of fellow survivors can empower you to feel more positive about your body.