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When you first bring your child home with an ostomy, it is scary. If you are like my husband and me, you have no idea what you are doing. While you are still in the hospital, there are nurses and aides there willing to help and guide you. But when you return home, you are all alone. One of the first questions we asked was, “what about bathing?”.
It may sound silly, but there was a grieving period for me about bathing Faith. I felt like the ostomy would prevent us from having that mother/daughter bath-bonding time. Faith received her Hirschsprung’s Disease diagnosis and ileostomy shortly before she turned 3 months old. So, we were able to bathe her the first few months of her life without an ostomy. It was sweet, and of course, I took cute little naked pictures of her for her first bath. But she was an infant, and she did not play.. I wondered if bath fun was a lost dream.
My fear was that we would not be able to enjoy playing in the tub with toys, rubber duckies, and bubbles when she got older. I thought bath time would be cut short, and become more of a chore than the fun, bonding time I had envisioned. But I was wrong. Faith and I have wonderful fun bath times. I actually think I probably enjoy them more than if she did not have her ostomy. It is a time I do not take for granted. Now that she is at the age where she loves to play in the tub, taking a bath is a big deal and full of excitement in our house.
Due to her ostomy, Faith does not take a bath as frequently as she would if she didn’t have one. Every morning, Daddy gets her ready. He washes her from head to toe, puts on a fresh bag (we use the two-piece system), and then gets her dressed.
In general, Faith has a full bath every 3 days or so. That is about how long we can leave her wafer on without it starting to leak or get itchy. The skin under the wafer can break down very quickly and develop a horrible rash. Removing the wafer and replacing it multiple times a day is hard on the skin, and can cause it to become very irritated. This is one reason we prefer the two–piece system, and prefer not to bathe her daily.
We quickly figured out how to bathe Faith. But, I have learned that we were not alone in wondering what to do. There are several Hirschsprung’s Disease groups on Facebook that I belong to and this question has been asked more than a few times. So, I thought that I would share with you our bathing routine. This is what WE do; it is definitely not the only way.
Bathing 101: Bag on or Bag off?
Do you leave the bag on or take it off at bath time? This is probably the number one question I see asked in association with bath time. Either way is fine. However, we always take Faith’s bag off before giving her a bath. One pro of leaving the bag on is that you don’t have to worry about poop getting in the water. This, of course happens if you take the bag off. But we still opt to take it off for two main reasons.
First, the adhesive that holds the wafer in place (if you use a two-piece system like we do) or the entire bag (if you use the one-piece system) is very sticky. It is difficult to get off. By taking the bag off for the bath, it allows it to soak some making it easier to remove without rubbing too hard on Faith’s skin.
Secondly, I like to let the skin under the wafer breathe a little. It is always covered and can get irritated easily. Even though, it is not a long time that it is out, it just makes me feel better to let it breathe for a minute.
What about poop in the Water?
This is probably the biggest concern parents have when discussing bathing without the bag. Faith has an ileostomy which means that her poop is runnier than most, and she poops constantly. I mean constantly. So it is a guarantee that she will poop while she is in the tub. So what do we do?
First let me say, even though Faith poops frequently, it is not usually a lot that comes out as once. Think the size of the tip of your pinky finger. So, I have two washcloths when I bathe her. One is for bathing. The other is to wipe the poop was it comes out of her stoma. As soon as I see it coming out, I quickly wipe it with the extra washcloth and continue with bath time.
How long is bath time?
There are times when bath time is cut short because of her output. If her output it thinner and higher than normal the bath is quick. We get in, I wash her up while she plays with her toys and we get out. Faith is at the age now where she loves bath time, so a quick bath usually bring on her sad face, and the dreaded “why” questions. But, she is very aware of her ileostomy, her stoma, and her output. Especially for a two-year old! So, I simply tell her that she pooped too much in the tub and it is dirty. Even at two, she knows she does NOT want to sit in poopy water. So out we go.
Days when it is thick (for her), we spend a lot longer in the tub playing. We play with the bubbles, sing, yell, and just have a blast! I have my extra washcloth ready to wipe the poop away. Faith will also say “Oh no! I pooped!”, if I miss a little bit.
Again, this is what we do and how we do it. At least for now. We are not sure how long Faith will have her ostomy. So, things may change as she gets a little older. For example, leaving the bag on may happen when she switches to taking showers. I don’t know. We tried a shower twice, and she hated it! So, I don’t think that is happening any time soon. It may also be different for children who are able to bathe independently. If Faith were older, it would be her preference, not mine.
The most important tip I can give is to enjoy your child, and that means enjoy bath time. Even with an ostomy, bath time is a fun, exciting bonding time with your child.
What do you prefer bag on or bag off? And Why? Are there any other tips that you would give?
What are some other routine things that you think may be different for a toddler/child with an ostomy?