Telling someone you have an ostomy can seem scary. When I choose to share my personal story with someone, it’s because I want them to understand my lifestyle, and to show how much better off I am with my ostomy. I’ve always struggled with telling people about my ostomy without provoking sympathy.
Click on the button below to watch my video about how to tell someone you have an ostomy:
Even when you feel that your life has been drastically improved by having an ostomy, it still can be nerve-racking to tell someone about it, especially the first time. I find it is easiest to form a script to introduce people to my situation. This script is universal and can be used with friends, family, love interests, and even kids! If the person seems uncomfortable after my explanation, I don’t elaborate. If the person seems engaged, he or she will ask questions or give you some verbal cue which says “I want to know more!” You can use my script or form one that you are comfortable with!
I find the best way to bring up this discussion is actually over dinner! Not to take them out to nice dinner before I tell them, but because my diet restrictions usually brings up questions, which is a nice segue! Usually the person asks me why I can’t eat raw vegetables or fruits. I answer by saying “Four years ago I was diagnosed with an autoimmune disease that attacked my colon. It got so bad that doctors had to take out my colon in order to save my life. Since I don’t have my colon anymore, I have an ostomy bag, and my life is different, but so much better.” Generally after that I ask “Do you know what an ostomy bag is?” if the person seems unsure. To explain an ostomy bag I concisely describe it by saying “An ostomy bag is a bag that is externally attached to my stomach.” If you chose to elaborate on the purpose of an ostomy bag you can. This is generally where I try to read the person, to see if they are comfortable enough for me to go on, or if they really hope that I would talk about something else.
This most recently came up while having breakfast at a B&B I stayed at on vacation. When I declined the offer of fresh strawberries, one of the guests asked why, so I used my “script” and it actually started a great conversation. If someone is interested, but asks you a question you’re not comfortable answering, you can say “I really appreciate that you’re interested, but I generally don’t answer that question.”
If someone is uncomfortable with hearing about your lifestyle, surgeries, and ostomy maintenance, try not to take offense. It’s hard to not take it personally when it’s such a big part of your life, but some people feel uncomfortable when learning about other’s health situations. They feel like they are required to say something, but don’t know how to respond appropriately. This does not mean that they think any differently of you. Opening up to someone about your ostomy can be extremely scary, but I’ve found that it’s so rewarding. I’ve become closer to all the people I’ve told about my ostomy and have such a great, understanding support system because of it! Good luck!
You can also watch my video about this topic here.
Hope you’re happy and healthy!
-Laura
For more information, see related ostomy support articles and ostomy resources here:
- UOAA Ostomy Support Groups
- What to Expect at an Ostomy Support Group
- Coping After Ostomy Surgery
- Ostomy Misconceptions | New Ostomates
- 10 Things I’ve Done Since Having Ostomy Surgery
Shield HealthCare | Stronger with Shield
Now that summer is here, may I swim in a pool? If so, will my ostomy bag be affected by chlorine in the water?
