Feeding Tube and a Colostomy Bag for a Baby

The first time that you see your child with a feeding tube and a colostomy bag, your initial thoughts will probably be very overwhelming. To be honest, looking at all the tubes and wires, can be very scary at first. Over time, you will get more used to it and have more experience in the daily care.

The best thing to remember about feeding tubes and colostomy bags is that these medical devices are helping your child to eat and to get rid of waste. Not all feeding tubes and colostomy bags are permanent, so this may be just a season in their childhood.  Even if a feeding tube and or a colostomy bag is needed for a longer period of time, we should focus on the good that these medical devices are doing to help our children grow.

Why would a baby need a colostomy bag?

In some cases, children are born without the ability to have a traditional bowel movement.  This can be due to abnormalities or defects, or it can be a result of a condition or infection.

My daughter was born without a fully formed anus, so her body had no way to remove stool, it would just collect in her intestines.  On day 2 of life she had surgery to place a feeding tube in her stomach and to have a colostomy bag placed.

When my daughter was born she was diagnosed with Esophageal Atresia and an Imperforated Anus.  This means she was born unable to swallow and this birth defect probably led to the anus not being fully formed in utero.

As you can see, she was very tiny at less than 5lbs and there was not much room left on her belly with the makeshift feeding tube and mini colostomy bag.  Her malecot feeding tube was eventually changed over to a traditional button type feeding tube when she was bigger about 6 weeks later.

Burping a Colostomy Bag

One of the fun things about a child with a colostomy bag, is that it isn’t only poop that collects in the bag.  The first time I saw my daughter’s bag fill up like a balloon, I was convinced something was wrong.  Thankfully we were in the NICU and there were plenty of nurses around to calm my fears.

Traditionally speaking the body gets rid of air or gas in two ways: by burping or farting.  Babies tend to need help getting burps out of their belly and also need a complete esophagus to do so.

In our case, my daughter had no possible way to relieve gas that was in her belly.  It couldn’t come up as a traditional burp and there was no exit opening for a fart.  So every time gas was in her intestines, it came out into the colostomy bag. 

Now with some children that do have a way of burping or farting in a traditional way, the need to burp a colostomy bag may be less.  Our colostomy bag had to be burped frequently in order to release the air.

The easiest way to burp a colostomy bag, is to unfold the closure and just open the end of the bag.  This will naturally let air out of the bag just like letting air out of a balloon.

We got into the habit of burping her colostomy bag at every diaper change because it was easy to pair these two activities.

Here is a pro tip for burping a colostomy bag:

After opening the bag and releasing the air, use a wet wipe to clean the edges of the bag.  Every time you open the bag, particles of poop can seep out or escape on to the edges.  

Do colostomy bags smell?

In general, the colostomy bag itself will trap the smell of gas and stool inside the bag.  Now when you open the bag, that gas and stool will have a garbage like aroma hit the air.

We learned very quickly that it is best to not put your face too close to the bag when you are changing the bag or burping the bag.  Just like you wouldn’t put your face near a dirty diaper.

Just in case you are wondering, the smell can be pretty gross with a young infant.  Babies tend to have very watery and sometimes foul smelling poop.  When that odor is released all at once, it can be very overpowering.

Thankfully, the smell goes away when you put a new bag on or seal up the bag.  If you use the tip from above about wiping the inside edges of a colostomy bag with a wet wipe every time you open it, this will also help keep the bag from smelling.

Colostomy Bag Leaking

A typical colostomy bag for a baby last between 2-3 days on average.  Unfortunately, one of the tell-tale signs that a colostomy bag needs to be changed is when you see the contents leaking out.

Your DME (durable medical equipment company) will typically give you 20-30 bags a month, so changing them more frequently than 2-3 days does happen.  

We have also noticed that over time we got better at securing a bag in place with tape and had less leaking.  We are a huge fan of “pink tape” which is a water-resistant tape that is easy to peel and tear to use to secure the bag.

Colostomy bag leaks can be a very serious problem if you have a colostomy bag and a feeding tube close together.

Risk for Infection related to Colostomy & a Feeding Tube

When a colostomy bag leaks fecal matter all over the stomach, you usually just wipe it up and go about your day.  It is an inconvenience, but not really that big of a problem.

When you have a colostomy bag right next to a feeding tube site, leaking fecal matter can now be a HUGE problem.

Not only do you not want fecal matter next to your food, you also really do not want poop getting into an open wound like a stoma for a feeding tube.  This can lead to bacterial infections in the stomach and infections on the skin surrounding the feeding tube site.

Unlike a stoma for a colostomy bag that is used to having poop on it, a feeding tube stoma goes into the stomach (or intestines with a GJ tube).

Common infections caused by poop around a feeding tube would be E. coli, hepatitis A & E,  and adenovirus.   These infections can cause intestinal pain, cramping, and diarrhea.

This can basically cause a cycle of poop getting on the feeding tube site, causing diarrhea, and then more likely to get poop near the site.  Just be very careful and mindful of fecal matter and clean it up as soon as possible to avoid infections.

Pediatric Colostomy Supplies

Most of the supplies that you will need for a colostomy will be provided to you by the Durable Medical Equipment company.  They are typically delivered to your door every month.

If you run out of supplies and need more, I always suggest checking with Facebook support groups.  There are lots of people that no longer need supplies or have an abundance that will send them to you for the cost of shipping.

At times you may go through more supplies than what you are prescribed, and in these cases, you should speak with your physician about updating your prescription for supplies.

Most insurance companies have limits to the number of each supply that they will cover every month, so you may need to either purchase these from your DME or from another source.

I recommend looking for supplies on sites like Vitality Medical or Carewell.  Both places offer quick shipping and offer supplies at a discounted price.  I would check the prices at your DME first, and then go check the prices on these websites, to find the lowest prices.

Colostomy Belts vs G Tube Belt

 A colostomy belt is similar to a g tube belt because it goes around the waist at the same area that the colostomy bag is located.  The main difference is that the point of a colostomy belt helps hold the weight of the bag and prevent anything from pulling or tugging on the colostomy bag.

In children, colostomy belts and g tube belts will also help keep little fingers from disturbing the colostomy bag or feeding tube site.

When my daughter was about 9 months old she discovered her colostomy bag and seemed to find joy in trying to rip it off.  She would scratch and try to get her fingers under the tape that held the bag in place.

Needless to say this was a problem because if the colostomy bag leaked or was removed, it had a higher instance of getting fecal matter on her feeding tube.  This problem was exactly why we first made padded belly bands.

The belly bands that we make are custom made for your child based on their waist measurements.  Not only will the belly band keep hands away from their medical appliances, it can also help with tummy time too!

My daughter had a huge problem with being comfortable during tummy time with her feeding tube and her colostomy bag.  We think that the combination of the two medical devices just put too much pressure on her stomach and made tummy time very uncomfortable for her.

She actually developed almost superhuman leg strength because of her aversion to tummy time. Unfortunately, this also meant her core muscles, arms muscles and trunk control was not at her developmental level.

By using a padded belly band, it actually helped disperse the pressure on the stomach and made it much more comfortable.  Within the first couple times of trying the belly band, she was able to last longer and longer during tummy time.

At 9 months old, she was constantly trying to roll out of tummy time instead of using the time to learn skills she would need later on to learn how to push up and to eventually gain head control.

For more information about belly bands and tummy time, check out this article : Can Babies with G Tubes do tummy time?

To check out all the different patterns and fabrics available for belly bands, check out our Collections page in our store.

If you do decide to try a belly band, make sure to add a note that the child has a colostomy bag.  We will add a little extra room to account for the bag and for air trapped in the colostomy bag.