If you are going to have or have just had ostomy surgery, you likely have many questions. How will your daily life change? What will recovery be like? Can you still travel, work and exercise?
Some people worry that having an ostomy bag will make everyday life harder. While it is a change, many people continue to live full, active lives with an ostomy.
More than 750,000 people in the U.S. have an ostomy. With modern pouching systems, trained nurses and support groups, most people go back to their normal diet, clothes, exercise and social activities once they adjust.
Read on to learn what you can expect as you return to work, play and spending time with family and friends.
What is an ostomy?
An ostomy is a surgically created opening in the abdomen (belly). This opening allows waste (poop or pee) to leave the body through a new route.
“An ostomy is created when a portion of the digestive or urinary system needs to be bypassed or removed because of illness or injury,” said Andrew Nejad, MD, a surgeon with Banner - University Medicine.
After an ostomy, waste comes out of a small opening called a stoma instead of through the genitals. The waste is collected in a pouch (ostomy bag) that sticks to the skin around the stoma.
There are different types of ostomy surgeries, including:
- Colostomy: uses part of the large intestine (colon)
- Ileostomy: uses part of the small intestine
- Urostomy: redirects urine through part of the urinary system
Some ostomies are temporary and help the body heal after surgery. Others are permanent.
Why would someone need an ostomy?
An ostomy may be needed when part of the digestive tract or urinary tract is diseased, injured or blocked. Common reasons include:
- Colorectal cancer
- Bladder cancer
- Inflammatory bowel disease (Crohn’s disease or ulcerative colitis)
- Diverticulitis
- Bowel obstruction
- Trauma or injury
What to expect in the first few weeks
The first few weeks after surgery are usually focused on healing and learning new routines. You will learn how to take care of your stoma, change your pouch and protect the skin around it.
Most hospitals connect you with wound and ostomy care (WOC) nurses to guide you step by step. They are specially trained to help you build confidence and troubleshoot problems.
Some people plan for an ostomy before surgery. Others need emergency surgery.
“When an ostomy is planned, recovery is often easier because patients meet with WOC nurses ahead of time and can prepare,” Dr. Nejad said. “Emergency ostomies can be more difficult emotionally and physically because patients have less time to get ready."
In the early weeks, you may notice:
- Tiredness: Surgery takes a lot out of you.
- Changes in appetite: Food may taste different or you may not feel very hungry.
- Different bowel patterns: Output can change day to day at first.
- Incision tenderness: The stoma itself should not hurt but the area around your incision may be sore as your body heals.
- A mix of emotions: You may feel relieved, worried, anxious, sad or self-conscious, sometimes all in one day. Some days may feel harder than others and that’s normal.
How long does it take to feel normal again?
“There is definitely an adjustment period,” Dr. Nejad said. “Patients are learning how to care for the ostomy while also recovering from surgery. With support and practice, most people get comfortable managing their ostomy in four to eight weeks.”
Confidence keeps growing as the months go by. You will start to:
- Change your pouch on your own with ease
- Notice which foods you can eat without problems
- Plan trips and outings without worry
- Trust that your daily routine works
Over time, life may become easier than you expected. "Many patients are surprised at how discreet modern ostomy systems are,” Dr. Nejad said. "Most people can go back to their usual activities, travel and exercises with minimal disruption once they adjust.”
Signs you may need extra support
Adjusting takes time. Some people benefit from extra support during recovery.
Talk to your health care provider if you notice:
- Persistent sadness or anxiety
- Social withdrawal
- Avoiding ostomy care or refusing to look at the stoma
- Difficulty returning to daily activities
- Trouble sleeping or eating
- Feeling hopeless or overwhelmed
“Identifying emotional struggles early allows us to connect patients with additional support and resources,” Dr. Nejad said. “Peer groups, WOC nurses and mental health providers can make a significant difference.”
When should you call your health care provider?
Contact your provider right away if you notice:
- Severe skin irritation around the stoma
- Persistent leaks
- Changes in stoma color
- Fever
- Severe stomach pain
- No output from the ostomy for an unusual amount of time
- Signs of dehydration
Tips to help you live confidently with an ostomy
You cannot control everything but you can make life easier with a few simple habits.
- Keep extra supplies on hand: Always have a backup pouch and skin barrier with you.
- Stay hydrated: Some ostomies make you lose fluids faster, so drink water throughout the day.
- Watch what you eat: Some foods can cause gas, diarrhea, constipation or urine odor. If you’re unsure how foods affect you, try them at home first before eating them in public.
- Empty your pouch often: Don’t let it get more than one-third full.
- Take care of your skin: Healthy skin around the stoma helps your pouch seal better.
- Find support: Join a support group, online forum or local meetup.
- Be kind to yourself: Some days are harder than others and that's okay.
- Return to activities slowly: Once your provider clears you, start doing your favorite activities again. Begin slowly and listen to your body.
Takeaway
Living with an ostomy is a big change but with time, support and proper care, you can still travel, work, exercise, eat well and feel like yourself. Reach out to your surgical team, your WOC nurse and other patients who have walked this path if you have questions or concerns.
Frequently asked questions about living with an ostomy
Is an ostomy permanent?
Not always. Some ostomies are temporary and reversed once your body heals. Others are permanent. Your surgeon will explain what is best for you.
What can you eat with an ostomy?
Your eating habits might change temporarily after surgery but many people go back to eating a variety of foods. Your provider may suggest eating smaller meals at first, chewing food well, drinking plenty of fluids and slowly adding different foods back into your diet. Keep a food journal to see which foods your body handles best.
Will my ostomy bag be noticeable?
Most pouches are worn under clothing and are not visible to others. You can usually keep wearing your usual clothes.
Can I have a normal sex life with an ostomy?
Yes. Many people enjoy healthy intimate relationships after surgery. Talk openly with your partner and your care team if you have concerns.
How often should I change my pouch?
Most people change their pouching system every three to seven days. You empty the pouch more often, sometimes several times a day.
Can I still work and go out?
Yes. Most people go back to work, social events and daily activities after they recover. You might feel nervous at first, especially in public. Your confidence will grow as you learn your routine and see that you can handle challenges.
Will people smell my ostomy bag?
No. Modern pouches have filters and odor-blocking materials. You usually only notice a smell when changing the pouch. Using drops, sprays or tablets can also help control odors.
Can I travel with an ostomy?
Yes, you can travel almost anywhere. Pack extra supplies, keep them in your carry-on bag and ask for a TSA notification card if you fly. Many ostomy patients travel internationally without any trouble.
