What Is a Stoma and What to Expect in the Early Days

The Little Red Bud, a red flower bud illustrating what a healthy stoma looks like. Photo by Rita Miramontes

Featured photo: "The Little Red Bud" by Rita Miramontes

If you or someone you love has just heard the word "stoma" for the first time, it can feel like a lot to take in. I've lived with an ostomy since 2008, and I remember how many new words got thrown at me in those first days. There's a ton of information about ostomies all over social media, TikTok and Instagram, and not all of it is accurate. So in this guide I share what I've learned from my own experience, alongside clear, trusted medical sources that helped me, from places like Cleveland Clinic, the NIH and UOAA.

My goal isn't to scare you if you're considering surgery, about to have an ostomy, or deciding what to do. It's to educate you, and to give you the tools, resources and knowledge I didn't have before my surgery and wish I had. I've been through surgery myself and have talked with thousands of people about their surgery and life afterward. If life brings you to this decision, I want you to have the best information, so you don't spend a decade in misery, in and out of hospitals and on lots of medications, the way I did, if that's not the path that's best for you. I want you to be able to make the best decision for your health, your life and your future.

Quick answer: A stoma is a small opening a surgeon creates on your belly so stool or urine can leave the body into a pouch. It's usually swollen at first and shrinks to its final size about 6 weeks after surgery. It has no nerve endings, so it doesn't hurt to touch (NIDDK; UOAA).

If you're facing surgery and feeling nervous, read Should You Be Afraid of Ostomy Surgery? and How Ostomy Surgery Saved My Life.

Contents

What is a stoma?

A stoma is a surgically created opening on your belly that lets waste (stool or urine) leave your body. During ostomy surgery, a surgeon brings part of the bowel or urinary tract through the abdominal wall to form it (Cleveland Clinic; NIDDK).

Where the word comes from. "Stoma" (and "ostomy") comes from the Greek word for "mouth" or "opening" (Cleveland Clinic WOC Nursing). That fits: it's a small new opening where waste leaves the body. For more on how the surgery came to be, see my post The Royal Flush: Kings, Courtiers and the Surprising History of Ostomy Surgery. Today, about 200,000 people in the United States have ostomy surgery each year, at every age (Cleveland Clinic WOC Nursing).

A few basics worth knowing:

  • It looks like a small red bud. A healthy stoma is moist and red (UOAA Colostomy Guide).
  • Size varies. A stoma may be about 3/4 inch to about 2 inches wide (NIDDK).
  • It has no muscle, so you can't control when output comes. That's why you wear a pouch (ostomy bag) attached to the skin around it (NIDDK).
  • It has no nerve endings, so touching it doesn't hurt (UOAA).
  • It can be temporary or permanent. Some people need one only while part of the bowel heals, then have it reversed (Cleveland Clinic).

The main types of stoma

The name of the stoma comes from the part of the body it's made from (Cleveland Clinic; NIDDK):

Type Made from What comes out
Colostomy Large intestine (colon) Stool, often thicker the further along the colon it sits
Ileostomy End of the small intestine (ileum) Looser, more liquid stool
Urostomy Urinary tract Urine

The colostomy output detail comes from the UOAA Colostomy Guide; the ileostomy detail from Cleveland Clinic. People with Crohn's disease or ulcerative colitis often have an ileostomy, as in this UChicago Medicine patient story from Dr. David T. Rubin's IBD Center.

What to expect in the early days

In the hospital. Before you go home, the care team will teach you how to look after your ostomy, stoma and pouch, and give you guidance on diet and activity (Lahey Health Library). Usually a wound, ostomy and continence (WOC) nurse does this teaching, and you leave with basic supplies (Memorial Sloan Kettering). Lahey also runs an ostomy support group every other month.

Your stoma will be swollen. That's normal. It shrinks to its final size about 6 weeks after surgery (UOAA Colostomy Guide), so measure it often and adjust your barrier opening for a good fit (UOAA).

Output changes. Stool may be liquid or watery at first, then thicken over time (UOAA Colostomy Guide). Empty the pouch when it's about one-third full (UOAA).

Pouch routine. Most people empty the pouch one or more times a day and change the wafer about every 3 days (NIDDK). Your nurse will tell you what's right for your system.

Skin care. Clean around the stoma with warm water and a mild soap without fragrance or oils, rinse well, and dry completely (Cleveland Clinic).

Helpful next reads: What to Eat After Ostomy Surgery, Leakage and Skin Irritation: The Complete Guide, and Sleeping Comfortably With an Ostomy.

Feelings are part of it. Learning to live with a stoma can be a big adjustment (Cleveland Clinic). It's normal if it takes a few days before you're ready to look at it.

HIRO ostomy belt worn horizontally under everyday clothing

When to call your doctor or ostomy nurse

Call your care team if you notice any of the following (Cleveland Clinic: Stoma; Cleveland Clinic: Ostomy):

  • Your stoma turns black, or you have pain, swelling or irritation around it
  • A bulge near the stoma that you can't push back in
  • No output, or very little output
  • Excessive bleeding from the stoma
  • Fever, nausea or vomiting, or other signs of infection
  • Severe cramping that lasts more than three hours
  • Skin irritation, burning or a rash

This article is for general information and isn't medical advice. Your surgeon and ostomy nurse know your case best.

Support for the road ahead

You don't have to figure this out alone. An ostomy nurse is your best ally. Read why on our Nurse Appreciation page, and find supplies, nurses and support groups on our Ostomy Resources page. UOAA also offers a support group finder and a New Ostomy Patient Guide.

Meet others who've been there. UOAA holds a National Conference every two years. It brings in professionals to share up-to-date information, and it includes a free stoma clinic staffed by volunteer WOC nurses (UOAA; UOAA). The 10th National Conference is August 18–20, 2027, at the Westgate Las Vegas Resort & Casino (UOAA 2027 Conference). I'd recommend going. It's a chance to meet people who have been through surgery, swap tips and learn from each other.

Free registration chance: To celebrate its 10th conference, UOAA's Lucky 100 program is giving away 100 complimentary registrations, 10 each month for 10 months (UOAA 2027 Conference). Check the conference page for how to enter.

Once your surgeon clears you for activity, a well-fitted ostomy belt can help hold your pouch secure. I've lived with an ostomy since 2008 and have been designing ostomy belts since 2009. The HIRO Performance Vertical and HIRO Performance Horizontal belts are made for everyday wear and active days. If a hernia near your stoma is a concern, see our Parastomal Hernia Belt page and ask your doctor what support is right for you.

HIRO horizontal ostomy support belt worn by founder Richard O'Hamill

Not sure which belt fits you? Start with How to Choose an Ostomy Belt or learn how an ostomy hernia belt may support parastomal hernia care.

Frequently asked questions

What is a stoma in simple terms?

A stoma is a surgically created opening on the abdomen that connects an internal organ to the outside of the body, so stool or urine can leave through it into a pouch (NIDDK).

What is the difference between a stoma and an ostomy?

The ostomy is the surgery that creates the new opening; the stoma is the opening itself. Doctors often use the words interchangeably (Cleveland Clinic; NIDDK).

What does the word stoma mean?

"Stoma" comes from the Greek word for "mouth" or "opening" (Cleveland Clinic).

Does a stoma hurt?

A stoma has no nerve endings, so touching it shouldn't hurt (UOAA). Pain, swelling or irritation around it is a reason to call your care team (Cleveland Clinic).

What should a healthy stoma look like?

A healthy stoma looks like a moist red bud on the skin (UOAA). A stoma that turns black needs medical attention (Cleveland Clinic).

How long does a stoma stay swollen after surgery?

It shrinks to its final size about 6 weeks after surgery, so remeasure it often (UOAA).

Is a stoma permanent?

Not always. Some stomas are temporary while part of the bowel heals and can later be reversed; others are for life (Cleveland Clinic).

How often do you change an ostomy bag?

The pouch is usually emptied one or more times a day, and the wafer changed about every 3 days (NIDDK). Follow your ostomy nurse's advice for your system.

Can you live a normal life with a stoma?

Yes. About 200,000 people in the U.S. have ostomy surgery each year, from all walks of life (Cleveland Clinic). I've lived with mine since 2008, and I surf, teach martial arts and perform fire arts.

Where can I meet other people with an ostomy?

Local support groups are a great start, and UOAA holds a National Conference every two years. The next one is August 18–20, 2027, in Las Vegas, and its Lucky 100 program is giving away 100 free registrations (UOAA).

Side profile of the HIRO ostomy belt with woman facing the ocean in Hawaii

Sources