Living With an Ostomy

Living with an ostomy can feel like a big change at first, but most people return to normal routines. This guide covers day‑to‑day care, eating and drinking, medications, exercise and clothes, and smart travel planning. It focuses on ileostomies and colostomies, which are most common in Crohn’s disease and ulcerative colitis. A wound, ostomy, and continence (WOC) nurse is a key partner for ongoing support.

Key takeaways

• A well‑fitted pouching system should be leak‑free, odor‑free, and comfortable. Seek WOC nurse help early for skin issues. (psag-consumer.wocn.org)

• Hydration is vital with an ileostomy. Use oral rehydration fluids during high output. Know dehydration signs. (mskcc.org)

• Some foods change output, gas, and odor. Re‑introduce foods slowly and chew well. (ostomy.org)

• Extended‑release and enteric‑coated pills may not absorb with an ileostomy. Ask for alternatives. (hmpgloballearningnetwork.com)

• Travel is doable. Pack extra supplies, split them between bags, and inform TSA about the ostomy. (tsa.gov)

What an ostomy is, and what to expect

An ostomy is a surgically created opening in the belly that allows stool to leave the body through a stoma and into a pouch. Common types are ileostomy (small intestine) and colostomy (large intestine). Ostomies may be temporary or permanent. After healing, people bathe, work, exercise, and travel as before. (fascrs.org)

Early after surgery, ileostomy output is watery, then thickens as the gut adapts. Colostomy output is usually pasty or semi‑formed. Many people empty the pouch several times a day and change the barrier two to three times per week. Showering is safe with the pouch on or off. Water does not harm the stoma. (fascrs.org)

Daily care: pouching basics and skin

• Aim for a snug barrier opening that matches stoma size. Re‑measure often during the first weeks as swelling falls.

• If there is itching, burning, or seepage under the barrier, change it promptly rather than waiting for a routine change.

• For uneven skin or skin folds, barrier rings, paste, or convex products can improve the seal.

• Keep skin care simple. Clean with warm water, pat dry, and avoid oily soaps on the adhesive area.

If redness, rash, or leaks happen, use the WOCN Peristomal Skin Assessment Guide and contact a WOC nurse if things are not improving within a week. Peristomal skin complications are common and treatable. (psag-consumer.wocn.org)

Eating and drinking

There is no single “ostomy diet.” Tolerance varies, especially right after surgery. Add new foods one at a time, chew well, and notice patterns.

• Ileostomy: higher risk of dehydration and salt loss. Aim for 8 to 10 cups of fluids daily, more in heat or with exercise. Use oral rehydration solutions during high output. Limit large amounts of very sugary drinks and alcohol if output spikes. Include salty foods as advised. (mskcc.org)

• Blockage prevention: in the first weeks, be cautious with stringy or tough foods like popcorn, nuts, corn, celery, and fruit peels. Chew well. Seek urgent care for crampy pain with little or no output, or watery output with bloating. Do not take a laxative for suspected blockage. (cancer.org)

Common food effects

Food effects vary by person. Track what happens and adjust. (medlineplus.gov)

Medications and supplements

After an ileostomy, some pills may pass through before they are absorbed. Watch for “ghost pills” in the pouch. Discuss with a pharmacist or prescriber if this happens.

• Avoid extended‑release and enteric‑coated tablets when possible. Use immediate‑release, liquid, or crushable forms when appropriate.

• Oral contraceptive absorption may be reduced; ask about alternatives.

• Do not start anti‑diarrheals, fiber bulking agents, or bile binders without checking with the care team, especially early after surgery.

These points are supported by ostomy pharmacotherapy reviews and patient education resources. (hmpgloballearningnetwork.com)

Activity, clothing, and intimacy

Gentle walking starts soon after surgery. As healing completes, most activities and sports are possible. For running, swimming, or contact activities, many people use pouch covers, support garments, or a stoma guard for comfort and confidence. If heavy lifting or intense core work is planned, ask the surgeon or WOC nurse about timing and technique. Parastomal hernia prevention with belts is uncertain, and support garments are best selected with a stoma care professional. (fascrs.org)

Clothing does not need to be special. High‑waisted underwear or leggings can smooth and support the pouch. Intimacy is usually fine once healed. Empty the pouch beforehand and consider pouch covers or smaller low‑profile options for comfort. (fascrs.org)

Travel and being away from home

• Pack at least double the usual number of supplies, split between carry‑on and checked bags.

• In U.S. airports, travelers do not need to remove or expose the pouch. Tell the officer before screening and request a Passenger Support Specialist if desired. A TSA notification card can help. (tsa.gov)

• Scissors with blades under 4 inches from the pivot can be carried on, but rules are enforced by officers at the checkpoint. Consider pre‑cut barriers. (tsa.gov)

Quick checklist for a day out or trip:
- Pre‑cut barriers and pouches, disposal bags, wipes, barrier rings or paste
- Deodorant drops or charcoal filters if used
- Extra clothes and a sealable bag
- Oral rehydration packets, especially with an ileostomy
- A brief medical summary and clinic contact

For more step‑by‑step home and travel skills, the American College of Surgeons Ostomy Home Skills Program is helpful. (facs.org)

Troubleshooting and red flags

Contact the care team or WOC nurse for:
- Repeated leaks or skin breakdown that does not improve in 7 days
- Sudden change in stoma size or color, or a bulge near the stoma
- Very high watery output, such as more than about 1 liter per day, or emptying hourly
- Signs of dehydration, such as dizziness, dark urine, or muscle cramps

Seek urgent care now for:
- Cramping belly pain with little or no output for more than 2 hours
- Nausea or vomiting with belly swelling, or a rapidly enlarging stoma bulge
- Signs of severe dehydration

High output and dehydration need quick attention, and suspected blockages should not be treated with laxatives. (mskcc.org)

FAQs

Will people smell my ostomy

Modern pouches are odor‑proof. Odor usually comes from leaks or when emptying. Certain foods raise odor, and deodorant drops can help. (medlineplus.gov)

Can someone swim or shower with an ostomy

Yes. Water does not harm the stoma. Many swim with a regular pouch, emptying it first. Adhesive may need more frequent changes with heat and moisture. (fascrs.org)

Where can ongoing help be found

A WOC nurse can tailor products and fit. Peer support and practical guides are available from the United Ostomy Associations of America. (ostomy.org)

Editor note: source required for any local supply vendors or insurance details that vary by plan.