Tayler, a disability advocate and ostomate, uses her social media platform to educate and empower others on their journey with chronic illness and disability. She created this guide to provide tips and resources for navigating life with an ostomy.
For more resources, you can follow @distaaybled on instagram.
Congratulations on joining the ostomate community! Whether you’re excited to see how your quality of life improves, or you’re grieving this major life change you weren’t expecting, we accept you for whatever phase you’re in.
Here are some tips and tricks for adjusting to ostomy life!
Pre-surgery
If you are able to prepare before surgery, here are some helpful tips:
Wear a trial bag: Ask your stoma nurse or contact ostomy supply companies (see below) and ask for a few samples to wear as a “trial bag.” You can desensitize yourself, get used to the feeling of it, know what to expect yourself to look like after surgery, etc.
Pick your spot: Some stoma nurses will meet with you and you get to have a say in where your stoma will be located. If this isn’t offered to you, ask your surgeon to meet with one.
Recovering from surgery
Take your time
It's okay to be upset or scared. You don’t have to look right away or empty your bag by yourself immediately. It's okay to ask the nurses to do it and wait until you’re ready.
Trial bag change
Ask for the stoma nurse to visit you while in the hospital and watch you do a bag change on your own to ease any anxieties about going home and doing it by yourself.
Opaque bags/covers
Oftentimes, they will have you using clear bags to monitor your output, however that can be difficult mentally. Using opaque bags with view windows or ostomy covers over clear bags can help hide your output but you can still monitor it.
Eating Habits
Ask your stoma nurse or surgeon about dietary restrictions, you could even request to meet with a dietitian. Check out this cheat sheet for reference.
Sample different products
Preferably still in the hospital and with the help of your ostomy nurse, reach out to different ostomy supply companies and ask for samples. Most supplies you’re sent home with from the hospital will not be what you end up using! Most companies will want to know the size of your stoma and whether or not you have a colostomy, ileostomy, or urostomy. There are many companies and it can be confusing to know who to contact, so here are some:
- Coloplast sample request
- Convatec sample request
- Convatec ostomy support program
- Convatec product guide (ask for their new ostomate welcome kit)
- Hollister sample request
- Hollister product selector
Types of products you may be introduced to:
- Two piece vs one piece systems
- Wafers
- Bags
- Barrier rings
- Stoma powder or paste
- Adhesive remover
- Skin barrier wipes
- Support belts
- Deodorizer drops
If you are having issues (leaks) with your current setup, contact your stoma nurse or an ostomy company. Many people get leaks because they are using the wrong barrier set up (like, flat vs convex wafer, for example). You should be able to go three to seven days with each bag change.
Aside from the essentials, there are also optional products to help make life with an ostomy bag a little easier, here are a few:
- Ostomy bag covers
- Lubricant and deodorizer drops
- Waterproof mattress cover
- Baby wipes and small squirt bottle for keeping your bag clean
- A small pouch to hold extra supplies on the go
