I’d say the most challenging and nerve wracking part of having a baby who needs an ostomy is the fear of changing the bag. They tell you during training in the hospital that a bag should last 3-7 days. So, when your bags are leaking every 3-7 hours (usually at the worst times like 3AM and at the one brave moment you decide to venture out in public with your baby), you figure YOU must be doing something wrong. Well, let me help you on this one, you will be lucky if a bag lasts 36 hours (about a day and a half). They usually only last about a day and on a very rare, lucky run you’ll get 2 – 2 1/2 days out of a bag.
I have not yet once in 5 months had a bag last more than 3 days and to be honest, they start to get gross and stinky, so you’ll want to change it anyway. The key is to make it a goal to get good enough at the bag change and maintenance to get it to last 36 hours as much as possible. The more you change the bag, the more the skin will get irritated and red under the wafer, so you want to change the bag as little as possible. But, go easy on yourself, I have yet to know anyone who can get those babies to last 7 days.
Let me share some of the things we learned along the way that have helped. You don’t believe them in the hospital when they tell you you’ll become and expert, but truly you will! When we first came home, we looked and looked for tips and pics to learn how to get that darn bag to stay on. We found some great tricks on chat boards from other parents online, connected through friends and family with other parents in real life who could be a resource when we had questions and our nurses have been invaluable.
We had a home nurse for the first 2 weeks who came to the house every 3 days. If your health insurance covers this service, go for it. If they don’t cover it and you can afford to pay for it yourself, it’s worth it, if even for one week. And, if you have any nurse friends or family, asking them to come over and hold your hand a little is great too. Thankfully I had all of the above, a home nurse for two weeks and my mother in law, aunt, cousins and a few friends are nurses who were all happily willing to stand beside me and help me stay calm while I learned. The true value is that you trust them when they tell you you’re doing just fine and that it’s just poop and you are not going to hurt the baby. My biggest fear was hurting him or making the stoma bleed and when I saw the poop, you would think he was hemorrhaging and going to die, the way I would work myself up. Nurses see this stuff all of the time, so they are calm and can help to give you perspective and keep you calm too.
You’ll also want to try to find some other parents who you can connect with as a resource and support system. My sister’s son is unfortunately in a CICU in Pittsburgh. One of the many blessings in disguise has been the people she has met along the way, including Stephanie, the mom of another little boy who is in the CICU. Her son has an iliostomy. So when we were rushed to CHOP a day after Jack’s birth and thrown into this whole crazy experience, Meghan immediately thought to connect me with Stephanie, who has been an invaluable support both online and this past weekend, in person. We took a trip out to Pittsburgh last weekend and had one of those really bad days – 4 bag changes in 12 hours!!!! I brought 6 changes with me thinking, I’ve never done that many in 3 days. Well, thankfully we had a connection because Stephanie was able to spot me 2 extra changes in case of emergency on the way home.
I highly recommend joining a group on Facebook like the Hirschprung’s Disease Families & Friends group. I searched and searched and had little luck finding groups for parents of babies with ostomies, but when I searched my son’s diagnosis I found a group of parents who are dealing with the same challenges. If you ever find yourself in the position that I was in to be in another city or just in a pinch, short on supplies or in need of help, it’s always an option to reach out to the community of folks who can help you to find a solution.
One of the things that we felt stuck on when we first came home was the wafers that they sent us home with from the hospital. They were constantly leaking and difficult to work with, but we thought it was our only option. In talking to Stephanie, she had been doing this for a few months longer than we had, she suggested we reach out to three companies and ask for samples of other products to try. We didn’t even know there were other products to try!!!! We were so grateful. Hollister, Convatec and Coloplast are the three main companies who deal with infant ostomy supplies. I went to their websites and reached out to request samples.
I had to speak with an ostomy nurse who asked some questions about the size and shape of our son’s stoma and the challenges we were facing. Within a week I had a handful of options to play with and try. For us, we found that the Convatec Little Ones wafer paired with the Hollister 3778 bag was the best combination for Jack. The Convatec wafer is thicker with a plastic gasket type addition that helps the bag to hold up better. The Hollister bag is smaller and has a valve vs. the fold and seal opening. Since our son is exclusively breastfed and his poo is liquid, using a syringe and a bag with a valve works best for us. You should play with the different options, mix and match and find the combination that works best for you. Then call your medical supply company and update your order to provide the supplies you prefer. For us, our insurance did not restrict our supplies to a certain brand and they allowed us to combine brands. You’ll want to check with your insurance company to see if they will do the same. Your case worker from the hospital or your medical supply representative should be able to help you with this.
Once you get the right fit for the bag and wafer, you’re in business and the you just have to get good at the change process. Check out my How to Change a Colostomy Bag.
Good luck and may the force be with you! I wish you well and please free to message me if I can help you in any way! firstname.lastname@example.org