Ileostomy Tips

In November of 2010, our lives changed forever when our first child, Collin, was born with cystic fibrosis and a common complication of CF, meconium ileus. Less than 48 hours after he was born, he had an emergency ileostomy and our education in the world of stoma care began.

Collin spent 27 days in the NICU and when we took him home, we were fully educated about stoma care…or so we thought! After several days we were at wits end, and after a great deal of searching and questions, we learned the following things that made our lives with a stoma so much better (and things we wish we had known much sooner!).

1. Do not use any product that has a moisturizer in it near where the bag will attach. We were using baby shampoo, which has moisturizer. The best option is plain, white Dial bar soap. It costs less than one dollar and will make a huge difference in how long your bag sticks.
2. Use the prep wipes with the stomahesive powder. Wipe the prep wipe around the stoma first then put the powder on it. Blow off the excess powder and then run another prep wipe over the area. This process crystallizes the powder and gives the adhesive on the bag something to “grip” to and increases the length of time your bag will stick.
3. Put your child in a diaper that is 2-3 sizes larger than he would normally wear. We put our newborn son in size 3 diapers. The diapers covered the bag and kept the bag from getting caught or pulled on anything. Another plus of this was that if the bag did start leaking, it was generally contained within the diaper, limiting staining and the need for more laundry.

These three tips made the time we had a stoma much smoother. Before these tips, we were changing bags every couple of hours (and our insurance only authorized 10 for two weeks and we were going through two to three a day). After implementing these changes, we were getting two to three DAYS out of each bag.

We hope others find these tips useful!