Caleb, two months old, with his colostomy.
Colostomy care. Not exactly covered in any parenting class. My son Caleb was born with VACTERL and required a colostomy at two days old. He had his reversal at nine months old. These are the tips and tricks I learned about colostomy care and bag changes. Always discuss any change to your recommended or prescribed treatment with your health care provider.
- Find what works for your baby. Start by checking out the Hollister and Convatec websites. There you will find information, instructional videos, printable pamphlets, FAQs, resources, supply catalog, and you can order free samples. Your medical supply company will have a catalog and should be able to provide free samples as well. The rest is trial and error. We tried both pediatric starter packs from Hollister and Convatec, ordered free samples of products we thought might work, and tried different combinations before finding the right one for Caleb. It is tedious, but it is worth it.
- Speed and preparation. Changing a colostomy bag in the NICU is one thing; changing a colostomy bag at home alone with a squirmy baby is another. If you have other children, they will learn this is the opportune time for mischief. Cut down on the steps required to change the bag. Pre-cut the holes in the wafer, pre-stick the bag onto the wafer (if using a two piece system), and pre-feather the wafer. Then mash the barrier ring onto the wafer. Open anything you need open and have all your supplies within arms reach. When it comes to changing time: toss the old, wipe with saline wipe, pat dry, apply skin protectant, apply barrier-wafer-bag combo, tape, and done. Make packs of the wafer-bag combo, saline wipe, skin protectant wipe, barrier ring, gauze, and tape. Put a few in the diaper bag and extras in each car. Hand sanitizer and extra clothes are a must.
- Dial soap and saline wipes. Regular baby soap and wipes leave a film that make it harder for the wafer to stick to the skin. Washing the stoma area with Dial soap or cleaning with a saline wipe will not leave a film and will help the wafer adhere better. Dry well.
- Filter. A bag with a filter helps let the air out and prevents it from blowing the colostomy bag up like a balloon. Genius.
- Cut outside the lines. Many wafers have a printed circle where you should cut the hole for the stoma. For most wafers, the hole can be placed anywhere and the wafer can be trimmed to a more suitable shape – as long as the bag can completely fit on the wafer. If your baby has a mucus fistula, it may be located very close to the stoma for the colostomy. Positioning and trimming the wafer along with strategic placement of the hole is key. Bonus: a stoma and mucus fistula should not be bagged together. If the mucus fistula does not produce a lot of discharge, a band aid is sufficient and the wafer can cover the band aid (reinforce with tape as that portion of the wafer will not adhere as well). For those fistulas that require a bag, consider using one large wafer, cutting two holes in it, then bagging separately or try positioning, trimming, and strategically placing the hole on each.
- Feather. A flat wafer, though flexible, has a hard time sticking to a round baby belly. Feathering, where small cuts are made along the outside part of the wafer, helps the wafer mold to their belly. Think of the cogs on a wheel- make small cuts from the outer edge going toward the inner edge- without cutting into the bag (pre-cut the hole and place the bag on the wafer first).
- Heat. Heat helps the wafer stick. I would stick the wafer-bag combo in my bra while cleaning him up to warm it up. Weird, yes. Works, yes. So will a heating pad on low, disposable hand warmer, your hand, or a warm rice sock. Do not forget to toss the disposable hand warmers in the packs (see #2 above) when it is cold outside. Warm the wafer before applying, then again after taping. Bonus: heat helps with gas pains.
- Wound care ostomy continence nurse (WOCN). Best phone call I made was to establish care with a wound care nurse at our local pediatric hospital. I learned from an experienced expert in ostomies and she was able to advise treatments for when Caleb’s skin around the stoma was irritated. Healthy skin is in. The area around the stoma will be reddened if using a wafer, but should return to normal color after several minutes like after giving your baby a bath sans bag. It takes a while for that newborn baby skin to become accustomed to the wafer. Keeping the skin around the stoma healthy is crucial. We found that a barrier wipe (no-sting was our preference) helped; there are also various powders, sprays and wipes that can help protect the skin. If the skin looks infected or has a rash, seek medical advice as there are prescription anti-fungal and antibiotic powders that can be used to help heal the area. Sometimes airing it out is the best. Clear your schedule, lay down lots of towels, and be prepared to dab away at poo. A hair dryer on low setting can help too. This too shall pass.
- Empty frequently. A leaking bag of poop is never discreet. Empty more frequently on airplanes. Trust me on that. Bonus: if your child has watery diarrhea, a tampon can help absorb the water and decrease the sloshiness (best used on lock and roll bags). Invention is the mother of necessity.
- Squirm proof. Preface: I had the child who at six months pulled off his bag and flung it across the room. During a doctor’s appointment. That type of guerilla warfare requires a multi-layered approach. First, get a good seal and tape the wafer down. Get an elastic bandage (like Coban or an ACE bandage) and cut it to where it can be wrapped around the waist twice, helping secure the bag. There are also ostomy holders, belts, and pouches that can be bought. Then use a diaper a size larger that can comfortably cover the colostomy bag. Put baby in a snug onesie (a size smaller may be needed). Avoid waistbands as they can tug or pinch the bag in two. Distract. Keep little hands busy. Hope for the best.
Bonus tip: Teach someone else to care for your child’s ostomy and how to change it. You may be surprised by who steps up and has a hidden talent for colostomy bags. In the least, teach them that a diaper worn sideways and changed frequently will work until you can properly change the bag. Children have ostomies for a reason – there is some stress in your life from dealing with your child’s medical condition. Being able to safely leave your child in someone else’s care, even if briefly, helps deal with that stress, even if a little.
Our time with the colostomy is done. We were lucky to have figured out the right combination for Caleb and he could wear his bag for a week at a time. There were days I never thought that could ever happen. I wish you and your baby have much success on this journey and that these tips were helpful.
If you have mad colostomy skills, please share your tips and tricks with us by commenting below! Thanks!