TABLE 1

Sample Question and Answer Format of Pediatric Ostomy Toolkit

Ostomy Toolkit SectionResponses From Primary Stakeholders
How do I tell my friends about my ostomy?“Since I just started high school last year many of my friends don’t know that I have Crohn’s Disease or that I have an ostomy, but I have told a lot of my really close friends. For me, it was easy to tell my friends. I would just tell my friends that I would be having surgery pretty soon and they would then ask, “Why?” so then I would tell them. The friends that I did tell, I was very glad that I had because a few of them got me get well gifts and it was really nice to know that they cared. A few of my friends even called me the day after my surgery, which was really awesome to hear that they truly cared even though they didn’t fully understand what my disease was all about. My advice for telling your friends about your ostomy is to be completely honest with your friends. Don’t be afraid to tell your friends anything. Your friends will care even if you think they won’t. Although if you don’t feel comfortable talking to your friends about your ostomy, don’t stress over it. When the time is right, you’ll know. Don’t worry about telling your friends, they will care for you!”“Above all else, having an ostomy is very personal and you have the ability to decide who to tell and how you explain it all. Personally, I was always very open about my ostomy and can remember holding up my shirt to show friends a week or two after my surgery. I talk very positively about my ostomy, and have honestly never had a negative reaction. I typically explain my disease, the need for surgery, and that now I don’t have a large intestine and wear a cloth bag on my belly at all times. I love to educate people and raise awareness, and encourage other ostomates to only tell others when they are ready and prepared.”
16-year-old girl with Crohn disease and a temporary ileostomy.23-year-old woman with Crohn disease and a permanent ileostomy.
Do I need an emergency kit?“The ostomy nurse at [hospital] helped [adolescent] get samples and 2 bags to use for emergency kits, one the size of a folder and the other more like a large pencil pouch. In the small kit, [adolescent] keeps an ostomy bag or two, scissors, tape, and a disposal bag. He can carry it with him anywhere. It’s usually in his book bag during school. He takes it to tennis matches and band competitions. When [adolescent] is at school or an all-day event, he takes a few more precautions. In addition to the small kit, he also takes a change of clothes (t-shirt, shorts, socks, and underwear), a large ziplock bag for dirty clothes, and a plastic grocery bag for discretion. He puts it all in a cinch sac, along with bottles of water. For school, he keeps a large kit in his book bag in his locker and one in the main office. That way he can go to whichever place is closer when he needs it, or he can ask someone to get his bag from the office if he is stuck somewhere and can’t get it himself. He used these kits mostly before he had an ostomy and had urgent trips to the restroom. He has not used them much since his colectomy.”“While it’s unusual to need to change my bag urgently when I’m out of the house, it’s important for my comfort and peace of mind to have an emergency kit with me at all times. I use a small pouch (about the size of a pencil case) where I keep a couple extra bags, flanges, barrier wipes, and garbage bags – it’s also an easy place to keep any pills I need to bring with me when I’m on the go. I chose a pouch that had a design I really loved, and it’s very easy to throw into my backpack or even my purse so I can bring it with me wherever I go.”
Mother of a 17-year-old boy with Crohn disease and a permanent ileostomy.23-year-old woman with Crohn disease and a permanent ileostomy.
Can I play sports with my ostomy?“Playing sports with an ostomy can be scary if you don’t have any protection. I have played soccer ever since I was 4 years old, it’s my favorite sport. I was so worried that after my surgery I wouldn’t be able to play again. Luckily I did some research and found wraps or belts to buy for sports. These belts are just like a small amount of hard plastic like material that goes over your stoma and a soft belt that goes around your waist to keep the armor on. I bought one and when I played for the first time after surgery I was nervous. I was afraid that my stoma would still get hit from either the ball or someone else, but nothing happened and I played like I didn’t even have an ostomy. I have been playing soccer for a long time now and I didn’t let my ostomy get in the way. Don’t be afraid to play sports with your ostomy, but make sure you have some sort of protection just in case you get hit with a ball. You don’t have to give up playing a sport because of an ostomy.”“When I started playing tennis, it was during a time when I was wearing shorts and t-shirts and I let my bag hang out of my pants and wore large t-shirts. On the first day of practice I quickly realized that the constant movement would lift up my shirt and reveal my bag to the other teammates. While, if they knew I had it, this situation would be perfectly fine, but my preference was that if they didn’t ask, I didn’t care if they didn’t know. I quickly decided that the current arrangements weren’t going to work, so I tucked my bag into my shorts to get the bag out of that way and out of sight. After practice I continued to try out this new method and decided it didn’t feel any difference than letting it hang out. What I learned from this was that during recreation, having the bag as comfortable as possible is most important, but during physical activities, I had to try different things to accommodate it to the sport. Once you find your happy spot, playing your favorite sports will feel just like playing without a bag.”
16-year-old girl with Crohn disease and a temporary ileostomy.17-year-old boy with Crohn disease and a permanent ileostomy.