(14-18yo)
Relationships
Your ostomy does not define your relationship (of any sort!)
Friends
Explain your situation to a close friend and lean on them for support. Again, be sure to clear this with them beforehand. Don’t ambush them with the responsibility.
ESTABLISH BOUNDARIES. Make sure it is CLEAR when there is something that you cannot do. If your friends are trying to ignore your medical needs and constantly pressure you to do something you cannot, then you need to make clear that they are crossing a line. If they continue to do this, despite your warnings, you will need to decide whether to stay friends or not.
Compromise when it does not hurt you (but do not compromise on your needs).
If you know your friends want to eat at a place that will cause you problems, you can eat beforehand, pack a snack, or you can stop somewhere afterwards.
If your friends/roommates are reluctant to listen to you, listen to their misgivings and reassure them.
Peers and Peer Pressure
You must be determining and unwavering as there will be a high amount of pressure in high school to be accepted by your social group.
In a casual setting, have a trusted friend that fully understands your situation so they can provide you support.
Be sure to clear this with them beforehand, don’t ambush them with this responsibility.
Your friends want to help you, they often just don’t know how or what is appropriate.
Your friends may encourage you to do activities, eat food, or do other recreational activities that you know will cause you problems with your ostomy. Be strong.
You decide when/where/who/how much information to share with people. Talk to your parents about who should know and what they should know.
Be prepared
Be prepared for the unexpected.
Know where the nearest bathroom is located so you can easily empty/check your pouch.
Keep extra supplies in various places (locker, makeup bag, purse, backpack).
Keep an extra set of clothes in your locker or car for any quick needed clothing changes. (be careful of leaving appliances in a hot car as they may change shape and consistency).
A bookbag is a useful tool wherever you go. Be sure to pack necessary supplies: Ostomy provisions, Stool slowing food (marshmallows work great), protein bars (in case your friends eat somewhere you cannot).
Be proactive about changing your appliance: Make sure that you are not waiting for it to fall off before you change it. Stay as proactive as you can, and you will avoid many hardships and mishaps.
Exercising/Playing Sports
You can exercise and play sports. Make sure you build up your activity level over time. Drink plenty of fluids before, during and after the activity. If you ever feel “lightheaded” at any point~ STOP the activity, drink fluids and rest. Contact your healthcare provider if you do not feel better.
You may want some sort of protection for your ostomy and there are many companies that sell belts/ covers and other accessories for protection.
When swimming, many people find that they can swim without making any changes to the way they wear their ostomy appliance. Others need to make some simple changes to ensure that everything stays where it is supposed to.
Here are some suggestions that may help:
- Wear a protective wrap or tight swimsuit to hold the ostomy appliance close to your skin.
- Do not allow air to stay in the ostomy pouch. This will cause it to float and possibly separate from the wafer or your skin.
- Reinforce the edges with barrier protectors or waterproof tape.
- Don’t apply a fresh appliance right before you get into the water. It may take several hours to fully adhere to your skin.
- You may want to change the appliance after swimming, especially in salt water which can break down the adhesive material faster.
- Remember that you sweat when swimming in warm water or working out hard, you may not notice it because you’re covered in water already. Sweating under the appliance may require it to be changed more often.
Dating
Your ostomy is a part of YOU, and if a partner is not accepting of that, then you cannot be your most authentic self — you are worthy of that!
There is no set timeline for when you disclose your ostomy and/or medical conditions; do so when it seems necessary/relevant/right. The right person will support you, your medical conditions and all! Help your partner get educated on what an ostomy is, what daily life looks like, etc.
Do not judge too harshly if your partner has initial hesitations when it comes to your ostomy, they may need time to warm up and/or get used to the idea. Plan dates around non-food-related activities if food is a challenge. Your health will ebb and flow, so there will be times when you rely on your partner more than others, make sure your partner has the support that they need when their role is more of a than a partner.
Talk openly about your conditions, it will make your partner more comfortable with what’s going on with you. Have a hospital plan for any emergencies, make sure your partner knows what to do and how best to help you. Talk to your parents about any dating concerns you might have.
Vacationing/Traveling
Check with your ostomy product supplier to see if they can ship emergency supplies to your vacation destination overnight.
If you are flying you may want to keep supplies close to you. If you normally cut your pouches you may want to consider precutting your appliances before your trip.
NOTE: Ostomy scissors are allowed on flights as long as they are less than 4 inches in the US and 2.4 inches in Canada.
Check with your airline before the trip to find out any specific guidelines. Consider proactively reaching out to Ostomy nurses at various healthcare institutions at your destination. Ask if they have emergency donated supplies you could obtain just in case. If you need to go into an Emergency Room to obtain supplies, research healthcare organizations likely to have a wide range of supplies to fit your needs.
Hint: Research large academic institutions near your travel destination which would likely have various fits.
Hope, support, and finding community
Parent Stories
Contact Us
United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.
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