(10-13yo)
Teachers
For the most part, all teachers want to see and help you succeed. They will listen if you explain yourself clearly and succinctly.
- Explain that there are times when you must leave the classroom because of a medical emergency. You do not have to go into the finer details, but make sure they are aware and understand the gravity of the situation.
- You and your parents should check in with the school nurse or health services to let them know of your needs.
- Let your parents know if a teacher is not being helpful. They can assist you with getting your needs met in a positive manner.
- You and your parents can work with the office of disability services (if your school has one) or similar support — they may be able to offer more formal documentation for accommodations.
Pack Supplies
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).
- Keep a set of pouch change supplies in a desk drawer/locker/cubby If you spend a lot of time in a certain academic building, ask an administrator/counselor/school nurse or others where and if there is a place to keep extra supplies.
- Make sure you always have enough backup supplies wherever you are (i.e. outings, work, dorm, etc.) Don’t depend on breaks or visits back home to replenish your supplies.
- 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.
How to tell my friends
“When it came to telling my friends, it depended on the person. The people I was closer to I told earlier on. They were shocked and asked a lot of questions, but they still treated me the same. It took me a little longer to tell my other friends. Most of them had no idea until I got my reversal surgery, but they reacted the same way my other friends did. The biggest thing was waiting for me to be comfortable with them before I told them.”
Sleepovers
“When I had sleepovers, I would either have them at my house so that I was more comfortable, or when I went over to other people’s houses, I told their parents everything I had to do for my pouch and told them what I would need. They were all very supportive about it and were willing to help. Some parents even let me use a private restroom away from everyone else so I didn’t have fear of someone walking in or having to answer questions for people I may not have known as well.”
Hot, Humid Weather
Many people find that hot, humid weather can make it more difficult to get their ostomy appliance to stay in place. Sweating and moisture around and underneath the appliance can break down the adhesive and lead to leakage or peeling.
Keep in mind that sweating can decrease the wear time on your ostomy appliance, so make sure to change it often.
Reinforce the edges with barrier protectors or breathable tape.
Use a personal fan or other device to keep yourself cool. Less sweating means fewer problems with appliance adhesion.
If possible, always change the appliance at least an hour or so before going out in hot weather to help it get a good seal on your skin. Bedtime is a great time to do this if you live in an area with a hot or humid climate.
Changing Body Shape
You can grow and change very quickly! Your stoma grows with you, so don’t forget to measure it periodically to ensure a proper fit around the stoma. The contours of your abdomen also change significantly during this time
If you begin having trouble with an appliance that has worked well in the past, let your parents know.
You might need to switch to a new product.
Many manufacturers will send you samples so that you can figure out what works for you. Often changing to a convex wafer, one-piece system, or adding a barrier ring can increase your wear time and eliminate leakage in this case.
Mental Health
Talk with your parents about your feelings and concerns. Depression and anxiety are extremely common, getting the correct therapy and medication plan can make the world of difference in your quality of life. It is not a weakness to receive therapy or take medication for depression, anxiety, etc.
Not every therapist is the perfect match for every patient. It can take time to find one that meshes well with your personality and gives you the ability to grow. Focus on the positives, not the negatives
- Try to replace thoughts of what you cannot do with an ostomy with the opportunities that having one has created for you. Remind yourself of everything that it allows you to do in your life.
- Think about all the problems that you were having that having an ostomy has solved for you.
- Think about how your life can continue now that you have an ostomy.
- Use positive affirmation but stay truthful. Do not lie to yourself.
Avoid triggers:
- For example, if you know that you get stressed out in situations where people are eating and there’s nothing safe for you, be proactive and pack a snack.
- Understand that expanding your comfort zone is, in fact, uncomfortable. Take it slow and enlist the help from your parents or close friend who has your best interest at heart.
- Don’t expect too much at first. There is a lot to learn.
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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