Living With an Ostomy

Living with an ostomy can feel overwhelming at first, but most people adjust and return to active, full lives at work, home, and on the road. An ostomy changes how stool leaves the body, not who a person is. With good stoma teaching, a steady routine, thoughtful food choices, and some planning for travel, an ostomy can become one part of life rather than the center of it.

Key Takeaways

• Many people with an ostomy go back to usual activities, including work, exercise, sex, and travel, after recovery and equipment “fine tuning.” (ostomy.org)

• Knowing the ostomy type (ileostomy vs colostomy) helps guide fluid intake, diet, and what to watch for with output. (nhsinform.scot)

• A simple daily routine for emptying the pouch, protecting the skin, and checking the stoma is the core of long term self care. (ostomy.org)

• After surgery, a lower fiber, easier to digest diet is often used for several weeks, then foods are reintroduced slowly while watching symptoms. (crohnscolitisfoundation.org)

• People with an ileostomy often need extra fluid and salt to prevent dehydration, especially in hot weather or with high output. (cuh.nhs.uk)

• Travel is very possible with an ostomy when extra supplies, paperwork, and a few “what if” plans are in place. (ostomy.org)

Understanding an Ostomy

An ostomy is a surgically created opening in the belly where part of the intestine is brought to the surface to form a stoma. Stool leaves the body through the stoma into a pouch that sticks to the skin.

In IBD, an ostomy is most often an ileostomy (small intestine) or colostomy (colon). It may be temporary, for example between stages of J‑pouch surgery, or permanent if the colon or rectum is removed.

In the United States, hundreds of thousands of people live with ostomies, and most return to active, healthy lives once healed and comfortable with their equipment. (ostomy.org)

IBD care teams usually involve a colorectal surgeon and a certified ostomy nurse. These specialists help choose supplies, teach pouch changes, and troubleshoot common problems such as leaks or skin irritation. (ostomy.org)

Daily Life and Self Care

Building a routine

A regular routine makes living with an ostomy feel more predictable. Many people find that:

• The pouch is easiest to empty when it is about one third full, before it becomes heavy or visible under clothing. (crohnscolitisfoundation.org)

• Pouch changes often happen every 3 to 7 days, or sooner if there is itching, burning, or a leak.

• A small “go kit” with spare pouches, barrier products, wipes, and a change of underwear reduces stress when away from home.

Over time, people learn how their own stoma behaves at night, with meals, and with different activities and can time emptying around that pattern.

Skin and stoma care

Healthy stoma skin is key to comfort. Tips often include:

• Making sure the opening in the skin barrier fits closely around the stoma to keep stool off the skin.

• Removing old wafers gently, supporting the skin with one hand and peeling slowly with the other.

• Keeping the skin clean and dry before applying new equipment, using barrier wipes or sprays if recommended.

The stoma itself should look moist and pink to red, like the inside of the mouth. Sudden changes such as a dark, pale, or black color, deep cuts, or heavy bleeding are reasons to contact the surgery or ostomy team urgently. (nhsinform.scot)

Clothing, activity, and intimacy

Most clothing works well with an ostomy. Some people feel more secure in:

• High waisted leggings, underwear, or support garments that hold the pouch close. (crohnscolitisfoundation.org)

• Stretchy waistbands that sit above or below the stoma rather than right across it.

Once cleared by the surgeon, many return to walking, swimming, cycling, and other exercise. Heavy lifting usually needs to be limited for several weeks while the belly wall heals.

Sexual activity is usually possible after recovery. Some people prefer pouch covers, smaller “mini” pouches, or special lingerie. Emotional adjustment and honest conversations with partners can be as important as any physical change. (ostomy.org)

Eating and Drinking with an Ostomy

General diet patterns

Right after surgery, many IBD and ostomy programs recommend a diet that is:

• Lower in insoluble fiber

• Lower in fat and added sugars

• Made up of softer, easier to digest foods

This gentler pattern is often followed for about 4 to 6 weeks to allow the bowel to heal and to lower the risk of cramping or blockage. (crohnscolitisfoundation.org)

Over time, many people with an ostomy return to a varied diet. It often helps to:

• Eat smaller meals 5 to 6 times a day instead of a few large meals

• Chew food very well

• Add new foods one at a time and note any clear patterns in output, gas, or discomfort (crohnscolitisfoundation.org)

A registered dietitian who understands IBD and ostomies can tailor advice if there are strictures, short bowel, or other special issues.

Preventing blockages, gas, and odor

Some foods are more likely to cause blockages at the stoma, especially soon after surgery. Tough, fibrous foods such as raw celery, sweetcorn, cruciferous vegetables, nuts, seeds, and dried fruit may be best introduced gradually and chewed very well. (crohnscolitisfoundation.org)

This simple table gives common patterns, though responses vary from person to person:

*Patterns are general. Individual responses differ.

If an ileostomy suddenly stops producing stool for more than about 6 hours and this is paired with cramping or nausea, guidelines suggest this may signal a blockage and the person should contact a stoma nurse or doctor promptly. (nhsinform.scot)

Hydration and salt

The colon normally absorbs water and salt. If it is removed or bypassed, as in many ileostomies, more fluid is lost in stool and the risk of dehydration rises. (cuh.nhs.uk)

Common advice for people with an ileostomy includes:

• Drinking at least 8 to 10 glasses of fluid each day, and more in hot weather

• Sipping fluids between meals rather than gulping large amounts with food

• Using oral rehydration or sports drinks at times of high output, if approved by the care team

• Adding a bit of extra salt through broths, salted snacks, or seasoning, unless there is a medical reason not to (cuh.nhs.uk)

Signs of dehydration can include dark or low urine, dry mouth, dizziness, fatigue, and rapid weight loss. (ostomy.ucsf.edu)

Work, School, and Social Life

Most people return to work or school once fully recovered from surgery. Planning helps, such as:

• Knowing where bathrooms are located

• Keeping a small supply kit in a backpack, desk, or locker

• Wearing clothing that feels secure and discreet

Some choose to share information about the ostomy with close colleagues, teachers, or supervisors, especially if flexible breaks are needed. Others prefer to keep it private, which is also valid.

Peer groups and online communities for people with ostomies can be powerful sources of tips and emotional support. National organizations such as the United Ostomy Associations of America maintain support group directories and education materials. (ostomy.org)

Traveling with an Ostomy

Packing and paperwork

Good preparation can make travel far less stressful. Helpful steps include:

• Packing at least double the usual number of pouches, wafers, and accessories

• Splitting supplies between checked luggage and carry on in case one bag is lost

• Keeping a compact kit with pre cut barriers, disposal bags, wipes, and spare underwear for use on the road or in planes

A letter from a healthcare professional that mentions the ostomy and medical supplies can smooth security checks or border crossings. National ostomy groups often provide printable travel cards in multiple languages. (ostomy.org)

Airports and flights

Security scanners do not harm the stoma or pouch. At screening points, some people quietly mention that they have an ostomy and may request a private pat down if needed.

Because cabin pressure changes can increase gas in the pouch, it helps to:

• Avoid very fizzy drinks right before and during the flight

• Empty the pouch just before boarding and again before descent

• Use pouches with filters or consider venting as taught by the ostomy nurse (crohnscolitisfoundation.org)

All essential supplies should stay in carry on luggage in case checked bags are delayed.

Road trips and other travel

For car or train trips, people often:

• Note rest stops or bathroom options along the route

• Keep supplies within easy reach, not buried in the trunk

• Store pouches and adhesives away from direct heat, since high temperatures can affect sticking power

In hot climates, extra attention to hydration is important, especially for ileostomies. (cuh.nhs.uk)

When to Contact the Care Team

Anyone with an ostomy should contact their surgeon, gastroenterologist, or ostomy nurse urgently, or seek emergency care, if any of the following occur:

• No output from an ileostomy for more than 6 hours, with cramping, swelling around the stoma, or nausea and vomiting (nhsinform.scot)

• Output that becomes suddenly very watery and much more frequent, especially with dizziness, thirst, or very little urine (ostomy.ucsf.edu)

• A stoma that turns very dark, pale, or black, or that pulls far below skin level

• Large amounts of bleeding into the pouch

• Severe or worsening pain near the stoma or in the belly

• High fever, chest pain, or other general emergency warning signs

For non urgent questions about leaks, product choice, mild skin irritation, or travel planning, a certified ostomy nurse or IBD team can usually help troubleshoot.

FAQs

Can someone with an ostomy swim or exercise?

Most people can return to swimming, walking, cycling, and many sports once healed from surgery, often with minor adjustments in clothing or support garments. Heavy lifting should be delayed until the surgeon confirms that the abdominal wall has healed enough to lower the risk of hernias. (ostomy.org)

Will an ostomy always mean a restricted diet?

Not usually. A more restricted, low fiber plan is common right after surgery, but many people slowly reintroduce a wide range of foods while watching for individual triggers. Some may have lasting limits if there are strictures, short bowel, or other conditions. (crohnscolitisfoundation.org)

How often should the pouch be emptied?

It is usually most comfortable to empty the pouch when it is about one third full, which reduces weight on the skin barrier and lowers leak risk. People with very liquid output may need to empty more often. (crohnscolitisfoundation.org)

Where can someone find support and practical tips?

National organizations such as the United Ostomy Associations of America, hospital based ostomy clinics, and local or online support groups offer education, peer support, and access to certified ostomy nurses. (ostomy.org)