Life With An Ostomy

From one ostomate to another

Life with an ostomy is still life.

Hi, I live with an ostomy too. I made this site to put the things I wish I'd known early on in one easy place: what the different kinds of ostomies are, how to try supplies for free, and where to find real support.

Whether your surgery is next week or years behind you, you are not alone, and it does get easier.

How to get free samples Join the support group

The 3 main types of ostomies

An ostomy is an opening made during surgery so that stool or urine can leave the body a new way. The part you see on your belly is called a stoma. It's usually pink or red, moist, and has no pain nerves. A pouching system (a skin barrier, sometimes called a wafer or flange, plus a pouch) collects the output. Here's how the three main types compare.

Colostomy

What it is
Part of the large intestine (colon) is brought to the surface of the belly to form the stoma. It's often on the lower left side, but the spot depends on which part of the colon is used.
Why people get one
Colorectal or anal cancer, diverticulitis, a blockage, injury, infection, fistulas, or some conditions present from birth. A colostomy can be temporary (to let things heal) or permanent.
What output is like
The farther along the colon the stoma is, the more formed the stool tends to be. Many people with a colostomy on the lower left have soft-to-formed output that may come at fairly regular times. Stomas higher up in the colon usually have softer, pastier output. Gas is common.
Pouching notes
Many people use closed-end pouches that are thrown away when full, while others prefer drainable pouches. A pouch with a gas filter can help. Some people with certain colostomies learn irrigation to empty the bowel on a schedule, but only with their doctor's or nurse's okay and training.

Ileostomy

What it is
The end or a loop of the small intestine (ileum) is brought to the belly to form the stoma, usually on the lower right side. Stool skips the colon entirely.
Why people get one
Ulcerative colitis, Crohn's disease, familial adenomatous polyposis (FAP), colorectal cancer, or injury. A temporary "loop" ileostomy is often used to protect a new connection lower down while it heals, such as before a J-pouch is finished.
What output is like
Liquid to pasty, and it comes often throughout the day because the colon isn't there to absorb water. The output has digestive enzymes that are hard on skin, so a good seal matters. People with an ileostomy are at higher risk of dehydration and food blockages.
Pouching notes
Almost always a drainable pouch, emptied several times a day. A snug, well-sized barrier opening protects your skin. If your stoma is flush or sits in a crease, ask your nurse about convex barriers or barrier rings. High-output pouches exist if you need more capacity.

Urostomy (ileal conduit)

What it is
The surgeon takes a short piece of small intestine, connects the ureters (the tubes from the kidneys) to it, and brings one end out as a stoma. That piece of bowel is just a channel for urine. It's usually on the lower right side.
Why people get one
Most often after the bladder is removed for bladder cancer. Other reasons include bladder damage from radiation or injury, nerve-related bladder problems, and some conditions present from birth.
What output is like
Urine drips out all the time, day and night. It's normal to see some mucus in the urine because the conduit is made from intestine.
Pouching notes
Urostomy pouches have a spout or tap for draining and usually an anti-reflux valve that keeps urine from washing back over the stoma. Empty it when it's about a third to half full. At night, many people connect the pouch to a larger night drainage bag so they can sleep through.
What about "continent" options with no outside pouch?

Some people have an internal pouch instead of a traditional stoma bag. Examples include the Kock pouch (a continent ileostomy that you empty with a small tube), the Indiana pouch (a continent urinary reservoir emptied with a catheter through a small stoma), a neobladder (a new bladder made from intestine and connected to the urethra), and the J-pouch (an internal pouch connected to the anus). These aren't right for everyone. Your surgeon can tell you whether any of them fit your situation.

How to get free ostomy samples

Almost every major ostomy company will send you free samples. Trying a few is the best way to find what fits your body and stops leaks, and it costs you nothing. Here's how I'd go about it.

  1. Know your stoma size and type

    Have these ready before you call or fill out a form:

    • Type: colostomy, ileostomy, or urostomy.
    • Stoma size: measure across it with the measuring guide that comes in supply boxes. Stomas often shrink in the first couple of months after surgery, so re-measure often early on.
    • Stoma shape: round or oval, and whether it sticks out, sits level with the skin, or dips in.
    • What you use now (brand and product number from the box) and what's bugging you, such as leaks, itchy skin, or wear time.

  2. Ask your ostomy nurse

    Your WOC or ostomy nurse can look at your stoma and skin and suggest specific products to try, like a convex barrier, a barrier ring, or a different pouch. Nurses often have samples on hand, too. If you don't have a nurse, the WOCN Society's Find-a-Nurse directory can help.

  3. Call or fill out the manufacturer's sample form

    Use the links below. Most companies let you request samples online or by phone. Many also have free patient support programs where specially trained staff help you pick products. Ask for the barrier and pouch together so you can test the whole system.

  4. Try one change at a time

    Wear each sample long enough to judge it fairly, and change just one thing at a time so you know what helped. Jot down how long it lasted and how your skin looked.

  5. Work with a medical supply company

    Once you find what works, you'll usually order ongoing supplies through a medical supply company (often called a DME supplier) or a pharmacy. Ask whether they take your insurance, whether they ship to your home, and how refills work. Some will also send samples. Your doctor will need to provide a prescription or order.

  6. Know what to expect from insurance and Medicare

    • Samples are free and don't go through insurance.
    • Medicare: Part B covers medically necessary ostomy supplies when your doctor orders them. After the Part B deductible, you usually pay 20% of the Medicare-approved amount. Use a supplier that's enrolled in Medicare. Medicare also sets limits on how many of each item you can get per month, so ask your supplier. Details are on Medicare.gov's ostomy supplies page.
    • Medicare Advantage, Medicaid and private insurance: coverage varies by plan and state. Many plans require an in-network supplier, a prescription, and sometimes prior approval. Call the number on your insurance card and ask how ostomy supplies are covered.
    • If a product you need isn't covered, ask your nurse or doctor about writing a letter of medical necessity, and ask the manufacturer's support team. They help with this question all the time.

Manufacturer sample and support pages

These are the companies' own pages for requesting samples or getting help. Phone numbers are the ones listed on each company's official website. Links open in a new tab.

Join my Ostomy Care & Support group on Facebook

It's a friendly place to ask questions, share what's working, vent on hard days, and celebrate the wins. New ostomates, veterans, and caregivers are all welcome.

Join the group on Facebook

National resources

Trusted organizations with education, support groups, and advocacy. Links open in a new tab.

Living well: everyday tips

Small habits that make a big difference. Check with your care team about what's right for you.

Diet

  • Eat slowly and chew really well.
  • Add new foods one at a time so you can tell what agrees with you.
  • With an ileostomy, go easy at first on stringy, high-fiber foods like corn, nuts, celery, and popcorn, which can cause blockages.
  • Foods like bananas, rice, applesauce, and peanut butter can help thicken output for many people.

Hydration

  • Sip fluids all day, especially with an ileostomy or in hot weather.
  • Watch for dark urine, dizziness, cramps, or a dry mouth. They can be signs of dehydration.
  • Ask your doctor whether an oral rehydration or electrolyte drink makes sense for you.
  • With a urostomy, good fluid intake helps keep urine flowing and clear.

Travel

  • Pack about twice the supplies you think you'll need.
  • Keep supplies in your carry-on, not your checked bag.
  • Pre-cut your barriers at home so you don't need scissors on the road.
  • Keep supplies out of hot cars, since heat can affect adhesives.

Skin care

  • Healthy skin around the stoma should look like the skin anywhere else on your belly.
  • Cut the barrier opening to fit your stoma closely, and re-measure if things change.
  • Clean with warm water and pat dry. Oily soaps and lotions can stop barriers from sticking.
  • Redness, itching, or soreness? Don't wait. Ask your ostomy nurse.

Clothing

  • Most people can wear the same clothes they did before surgery.
  • High-waisted pants, suspenders, or a looser waistband can be more comfortable.
  • Ostomy wraps, support belts, and swimwear are made just for us.
  • Empty your pouch when it's about a third to half full so it stays flat and secure.

Heart and mind

  • It's normal to grieve, feel angry, or feel self-conscious at first.
  • Talking with other ostomates helps. That's what the support group is for.
  • If low feelings stick around, tell your doctor. Help is available.