Living With an Ostomy

Why This Matters

Adjusting to life with an ostomy can feel overwhelming, especially if it’s new. Your care team is here to support you—whether in clinic, through telehealth, or with concierge care at home. This guide will help you prepare for your appointments, ask the right questions, and take an active role in your care.

✅ What to Have Ready for Your Appointment

• Medication & Health List – All prescriptions, over-the-counter items, and allergies.
• Surgery Information – Date/type of surgery, and any hospital discharge instructions.
• Ostomy Supplies – Bring or have available your current pouching system for telehealth or concierge visits.
• Photos (if needed) – Take clear photos of your stoma or peristomal skin to show changes over time.
• Daily Routine Notes – How often you empty or change your pouch, challenges you’re experiencing, or any leakage/odor issues.

❓ Questions You Can Ask Your Provider

1. About the Ostomy

• What type of ostomy do I have (colostomy, ileostomy, urostomy)?
• How does this type affect my digestion, urinary function, or daily life?
• What is normal stoma appearance and output?

2. About Supplies & Care

• Which pouching system is best for me?
• How often should I change my pouch?
• What should I do if I notice leakage, irritation, or skin problems?
• Are there products to help with odor or improve pouch adherence?

3. About Daily Living

• Can I return to exercise, work, or sports?
• What foods or drinks should I avoid—or include—to help with output?
• How can I travel safely with my ostomy supplies?
• What should I carry in an “emergency kit” when leaving home?

4. About Long-Term Health

• How do I prevent complications like hernias or skin breakdown?
• How often should I follow up with an ostomy nurse?
• What should I do if I notice changes in my stoma or output?

📝 Tips for a Good Visit

• For telehealth: Have your supplies and pouching system nearby so your provider can guide you step-by-step.
• For concierge visits: Prepare a clean, private space at home where your nurse can assess your stoma and supplies.
• For all visits: Write down your questions before your appointment. Don’t be afraid to ask for a demonstration. Take notes or ask for written instructions.

🌐 Helpful Resources for Ostomy Patients

1. United Ostomy Associations of America (UOAA)
   www.ostomy.org
   Patient stories, lifestyle tips, support groups, and advocacy resources.
2. Wound, Ostomy and Continence Nurses Society (WOCN)
   www.wocn.org/patients
   Ostomy care guides, educational videos, and patient tools from certified specialists.
3. American Cancer Society – Ostomy Support
   Ostomy: Coping with Surgery & Life Changes
   Ostomy basics, emotional support, and tips for daily living.
4. Crohn’s & Colitis Foundation – Ostomy Resources
   www.crohnscolitisfoundation.org
   Guides for patients with IBD-related ostomies, diet, and emotional support.
5. MedlinePlus – Ostomy
   medlineplus.gov/colostomy.html
   Reliable medical information about colostomies, urostomies, and ileostomies.
6. Coloplast Care
   www.coloplastcare.com
   Ostomy education, product tutorials, and lifestyle support tools.
7. Hollister Incorporated – Ostomy Support
   www.hollister.com/en/ostomycare
   Guides, videos, and downloadable booklets for ostomy management.
8. Convatec Me+™ Program
   meplus.convatec.com
   Patient support, peer stories, and practical living tips.
9. Ostomysecrets
   www.ostomysecrets.com
   Clothing, wraps, and accessories designed to help people with ostomies feel comfortable and confident.

Living with an ostomy takes adjustment, but with proper supplies, education, and support, you can live confidently and comfortably.