(14-18yo)
After having surgery, you will want to make sure you have all the needed information about your ostomy, what to expect and when to call.
Keep appointments.
Write down any questions you might have and bring to office appointments.
Work with your parents about how to return to school.
Talk with a school nurse about your needs.
Make sure you have supplies and how to get them.
Remeasure your stoma before ordering more.
Store ostomy equipment in a cool dark place (heat can alter).
What To Expect
Medications
- Let the pharmacy know of any medications you are taking.
- Carry your medication list with you.
Stoma
- All stomas look different.
- There are no nerve endings when it is touched.
- It is normal that it can be swollen after surgery~ it may take 6-8 weeks to shrink to a smaller size.
- Remember to measure your stoma frequently for the best fit.
- Empty the pouch when 1/3 full.
- Do not use baby wipes or moisturizing soaps to clean around the stoma as they prevent the barrier from sticking to the skin.
Stool
- Your stool will continue to thicken to a soft formed stool.
Diet/Liquids
- You should be able to eat the same foods as other adolescents unless your healthcare provider says otherwise.
- Make sure to keep yourself hydrated~ think 8 or more glasses of water/day.
- You may need to release air from the pouch if you are using a straw, drinking carbonated beverages, chewing gum or eat quickly.
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.
- Check in with the school nurse or health services to let them know of your needs.
- Talk to a counselor if a teacher is being uncooperative. They can assist you with getting your needs met in a positive manner.
- Consider asking the school to work with you on a “504 plan” to accommodate your needs. Examples of accommodations:
- Being allowed to sign-out for the restroom without explanation.
- Extended time for examinations.
- Permission to record class lecture.
Work/Employment
- Human resources can help, but their primary purpose is to shield the company from liability.
- Don’t be shy about asking for accommodations (flexible hours, private bathroom access, etc.)
- Keep an alternative work outfit with you.
- You don’t have to disclose your medical situation to anyone unless you choose to!
- Discrimination based on disability is illegal; bring in assistance if necessary.
- Talk with your Human Resource (HR) representative about short-term and long-term disability policy if there is one.
- Make sure you have access to a bathroom when necessary.
- Communicate openly with your HR representative/supervisor about upcoming appointments/procedures.
How to tell my friends
- You can decide where/when/whom to tell or whom not to tell.
- Tell persons you are comfortable with.
- Be prepared for people to be shocked and they might ask a lot of questions or none.
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, be open to switching to a different 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.
Advocacy
- There is no better advocate for yourself than you.
- You know how you are feeling better than anyone else.
- Don’t be a doormat: Your needs are important, don’t let others convince you otherwise.
- Be assertive without being aggressive.
- Be Resolute: Your medical needs are not something that can be compromised.
Miscommunication
- Make sure that you communicate your needs clearly.
- Get the other party to repeat what you said in their own words, so you know that you are on the same page and they understand.
Mental Health
Our greatest glory is not in never failing, but in rising every time we fall. Talk with your parents about your concerns and needs. 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.
- It is not a weakness to 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 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 of a friend who has your best interest at heart.
There are several blogs, forums, and groups available:
- Join a support group! Email pediatric.ostomy@gmail.com to learn more about the Pediatric Ostomy Group Support (POGS) that meets on Zoom once per month for parents and kids.
- Check out sites like Girls with Guts and others.
- Attend the UOAA: Chat room where teens with ostomies can come together and talk about their experiences and concerns. Youth Rally 5-night summer camp promotes wellness, self-confidence, friendships, and fun!
Be kind to yourself! In high-stress situations, take a moment to ground yourself and practice self-care.
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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