Looking for advice for my little brother starting 5th grade with a urostomy
Hi everybody!
I’m looking for some advice for my little brother, Ben, who has had a urostomy since he was around 7 years old. He was born with bladder exstrophy, and getting to the point of having his urostomy was a long process for our family. He dealt with recurrent bladder infections that resulted in febrile seizures, life flights to Mayo, provider denials, and a lot of uncertainty while my mom was trying to get him the care he needed. Eventually, after a lot of work, he was able to see a wonderful pediatric urologist and a loving care team at Mayo who helped us figure out the best path forward, and he ultimately received his urostomy. He is now getting ready to start 5th grade next week with his twin sister. Ben has always been pretty accepting of his bag, and I think he has done really well with it, but as he has gotten older, he has started to notice some of the social differences. One thing that has been bothering him is feeling like other kids don’t invite him to sleepovers at their houses the way they do his sister. I think he is becoming more aware that his bag is different, and I want to help him feel comfortable and confident as he gets older.
One thing we have been struggling with lately is the little belt he currently uses. It has been rubbing against his stomach, and we have tried Band-Aids and other things to protect the area, but he is a very active kid and they don’t always stay in place. I attached a picture of the belt he currently uses for reference. I’m also wondering about the more supportive ostomy belts or wraps that actually cradle the pouch and keep it closer to his body instead of letting it hang freely and pull downward when there is urine in it. I’ve seen some online, but most seem to be made for adults, so I’m not sure what would work well for a 10-year-old. I’d love recommendations for something that would give him support without restricting his movement while he’s at school, playing, or running around. He also sometimes forgets to empty his bag as often as he should. We do our best to remind him and have tried timers, but there are obviously times when we can’t. If anyone has tips that helped a child become more independent with that, I’d love to hear them. We’re also looking for recommendations for bag covers that work well for kids. He wears shirts over it, but I think having a little extra privacy could help him feel more comfortable as he gets older.
For some context, I’m his older sister. I’m 25, in college, and I’ve had to take on a pretty big caregiver role for my siblings growing up. I don’t make a ton of money, so I’m hoping to find options that aren’t going to cost an arm and a leg. I currently work in healthcare, so I understand that medical supplies can be expensive and that sometimes the more expensive option is worth it. We’re very fortunate that my mom has good insurance and that his necessary supplies are covered, and we’re not looking for someone to provide those for us. I’m really just trying to find some of the extras that could make things easier for him, whether that’s an affordable product, something worth spending a little more on, or even a simple trick that another family has found helpful. I’ve spent a lot of time searching online and I’ve used Reddit for advice on other things in the past, so I figured this would be a good place to ask people who actually have experience with ostomies. I don’t want to accidentally make things harder for him or turn something that he has already learned to live with into another challenge.
More than anything, I want Ben to be able to start 5th grade and just be a kid. He’s outgoing, lovey, inquisitive, funny, and incredibly resilient. He loves being active and keeping up with everyone, and I want him to be able to stay that way, go to sleepovers, and do the things he enjoys without feeling like his urostomy has to limit him. If you have a child with a urostomy, grew up with one yourself, or have experience with pediatric ostomy supplies, I’d really appreciate any advice, recommendations, or things you wish you had known at his age. I’m really just trying to do right by him and make sure this is something that feels accommodating and supportive rather than something that makes his life harder. 💕