Many times over the last month I have thought to myself, "geez, I wish I knew all of this when I was in China!" Our journey with Hannah has certainly been one of trial and error and finding just the right solution to her medical needs. I will be the first to tell you we don't have it down to a science, and spend many days covered in poop, but I feel like I can certainly offer some advice on what to bring to China and how to care for a child that has a colostomy. I figured there might me a mama or two that would find some value in this information, so here it goes!
First of all, colostomy supplies are expensive. Chances are your child in China will be diapered. Our daughter had a normal diaper for pee, and then another diaper laid sideways and tucked down by her sides and wrapped into the bottom diaper. It was all tied together with a wrap. They changed her every 2 hours, blow dried it at changes and applied Desitin to keep the skin clear. The first time I saw her nannies change her, I turned my nose up at it and thought to myself, "they didn't wipe that very good, they didn't even use baby wipes!" Let me tell you- now I know why!!!! The skin around a stoma is incredibly sensitive. It breaks and bleeds easily. You have to be oh-so-gentle! We learned to just do a gentle wipe with toilet paper. We learned quickly that baby wipes destroyed the skin around her stoma and we even made her skin so raw, the desitin would not stick to it anymore. We have since found some great colostomy bags that we can keep on for 24 hours at a time, but we still diaper out of necessity. (bags just don't work for her consistently!) We found a great cream called ILEX. You can purchase it on Amazon, but it is very hard to get. You apply it to the skin and then cover it generously with vaseline. (If you don't cover it with vaseline, the cream gets stuck to the diaper and pulls the skin.) This was an absolute lifesaver to my daughter's skin. It completely healed her! Just recently we started using Criticaid, also purchased on Amazon. It is a thick paste. We wipe the poo off with toilet paper, then apply the cream generously!!! It has also healed her skin and is a good alternative to the ILEX. (Criticaid also ships with Amazon prime, so you get it fast!) Another thing we learned was to use a diaper that is a few sizes smaller on the one that is laid sideways. We found that LUVS don't hurt her skin. She is 30 lbs, so we use a size 5 on the bottom and a size 3 on the top. We cut the tabs off the size 3 so they don't flap up on her belly. We also change her every 2-3 hours to *try* and keep her clean. If you are adopting a child from China with a colostomy, I would bring different size diapers, a cotton tie to hold it all together, and many tubes of cream. Remember- not all creams are created equal. Spend the money to get a good barrier cream!
Something I REALLY wish I would've done, was researched different types of colostomy bags and maybe even watched some You Tube videos on how to apply a colostomy bag. If I had to do it all over again, I would contact some of the big companies- like Coloplast and Convatec to get free supplies. There are pediatric colostomy supplies and I have found that these companies send samples generously! Also, try getting in touch with an ostomy nurse or wound care nurse that can hook you up with everything you will need! There are different types of bags... one pieces, two pieces, those that empty and those that are closed. It is just trial and error to see what works. We fell in love with the teddy bear bag, two piece, made by convatec. We can get this bag to stay on longer than any other we have tried. When you apply the bag, the skin needs to be clean with soap and warm water and dried completely. You need to apply a no sting skin prep to help the wafer stick to the skin. We use Smith and Nephew no sting skin prep (also purchase this on Amazon...) Once the wafer and bag are attached, we use water proof tape to put over it to make sure it is sealed well. So... consider packing these supplies:
1) a pediatric colostomy bag/wafer with a "cut to size" hole. We can only get bags to stay on for a day, if we are lucky, so plan to take several bags. Pack the diapers/creams as a back up!
2) skin prep wipes
3)water proof tape (companies will provide this with the samples if you ask!)
4)small scissors to cut the stoma hole
5)regular scissors to cut tape
I know that not all stomas are created equally, this was just my experience. I think it would be better to go with "too much" versus "not enough". We found it incredibly difficult to find supplies in China, so make sure you are well prepared!
