Explaining My Ileostomy to Young Kids

I'm a mother of a 5 and 6-year-old, and I got my ileostomy two years ago. They are starting to wonder why mommy goes to poop in a bag. I don't know how I would tell them or if I should show them my stoma because I think they would get scared. I tell them mama needs a bag because my body doesn't work right and I have a disease, but then my 6-year-old asked how the poop comes out. All I say is, "It's confusing now, and I'll tell you when you're older." My 5-year-old even said, "I don't like how you go poop." It made me cry, even though I know she wasn't being malicious. My husband hasn't even seen my stoma. I just don't know how to go about telling them or if I should even show them the stoma. What do other people do?

Kids learn from show and tell. Kids learn more in life from the age of zero to five. Now is the time to tell them, oh, and don't forget your husband. Two years and you haven't told them is doing more harm; tell them, do it now.

Regards, IGGIE

Just tell them you have a front butt.

Keep it light. Mommy has a special opening in her tummy to poop. They may ask why; tell them you had an accident or a disease, and the change made Mommy healthy and happy. They will ask more questions later.

My husband never saw my stoma either. Showing someone your butt hole is not usual. I never saw his butt hole either.

My children saw my bag only.

Maried has the right approach. The more you normalize it, the easier it will be for them.

My Ostomy Journey: Jearlean | Hollister

Kids are normally the easiest ones to accept stomas; just keep it simple: Mommy had a poorly tummy, now I poop in a bag, and I'm well again. Their first words are usually "yuck," then they laugh their heads off about it for 2 minutes and just think of it as a normal everyday thing, as it is. Don't be surprised if they tell all their friends, "Mommy poops in a bag," if anything like the kids I know, lol. I've never shown anyone my stoma except doctors and nurses and the photos that used to be in ostomy journals, lol, but it's just doing whatever you feel is right.

I had the same concerns about telling my 6-year-old granddaughter. She knew I had a bag, that I farted (loudly, as she always tells me), and that I poo in the bag. Well, one day while I was in the bathroom, I happened to have my shirt above the top of my bag, and she opened the door to ask me something and stopped cold, "Mimi, what is that?" Well, I had no choice but to show and tell her, and she was having a sleepover that night, so I told her in the morning I needed to shower and change my "system," and if she would like to see, I would call her when I was ready. I let her ask all the questions she wanted, and she was really okay with things. Very curious, as children are. I tried to keep explanations to questions as truthful as I could for her to understand.

I think a large part of it is how accepting we are of our stomas. It was a really rough couple of weeks at the beginning for me, and if that had happened then, there is no way I would have been that open about things with her, and I know she would have felt my fear that I had in the beginning. (The first few weeks, my husband had to help me with my changes as I just couldn't handle it on my own mentally. Now, I do things all on my own.)

The more we pathologize it, the more freaked-out children and lovers will be.
If it's normalized in our own minds, it will be in theirs. “No big deal” is not a big deal.
Thousands and thousands of ostomies are surgically performed daily. Why would I be embarrassed of my stoma when we see such rudeness that some people show no shame over?

Hey there,

I have a colostomy with a stoma and bag. I'm also a psychotherapist by profession and work with children. I would be very honest with your children and describe to the best of your ability how it works in terms they can understand. Trying to withhold information will only make their curiosity grow, and if you continue to evade, they will eventually believe there are certain things they can't speak to you about. My partner has not seen my stoma either, and I prefer it that way. After all, if we didn't sexualize our buttholes, we probably wouldn't be showing those off either! I would talk to your kids about why you need an ostomy to survive and how it makes your life livable...what would happen if you didn't have an ostomy. Explain the necessity behind it and express how important it is for you to maintain your health. You can identify with your little one by telling her you would prefer not to poop in a bag if you could, but that you don't have the option and that it helps you be able to be a healthy mom for him or her. I don't know that I would show them your stoma. I have three kids, and none of them have ever seen mine, though they have seen my bag and they know that's how I poop. I find my stoma deeply personal. These can be such difficult topics to tackle, but I think you're doing an amazing job just seeking information and trying to understand how to best address it!

Absolutely - in 50 years, I have never felt the urge to show my stoma to anyone (it may decide to display its wares at that particular time). Only to the medical professionals who need to see it.

Nor have I ever felt the need to display my bag either for praise, sympathy, or any other bizarre reason.

I would just explain it to them in simple terms. I was diagnosed with UC the week our daughter started preschool 16 years ago. It wasn't easy for either her or me that I wasn't able to be there for her, but her dad and I explained that my tummy was sick, and I would much rather take her to school than be in the hospital, but that I was going to be just fine. Fast forward to last December, and now I have a loop ileostomy (soon to become permanent due to recurring fistulas near the rectal region), and she and our son are cool with it. My son just graduated from high school in June, got his firefighter certification last year, and is taking EMS training now. I have offered to let him see my stoma while changing out my pouch, so that he knows what it looks like if he comes across it in the field. His opinion is, ewww mom that's gross. Kids are pretty curious, and at 5-6 love learning about "weird" things.

Hi, I agree with everybody who spoke above, but one thing to be careful of is that the kids don't think that they will either inherit or tell them there is a very small chance that they will ever have to do this, and that makes you very special. In my experience, I told every single child in my little world, and they thought it was the coolest thing ever. I was in a church once, and I saw my friends' kids, and they came running up and said, "Guess what? Aunt ET farts in a bag!" Everyone in the church looked at me; I could've cried, or I could've left. I chose to laugh, which made everyone else laugh. I feel as though anybody who wants to see it or is curious, I'm happy to show them. I think it takes away some of the stigma, and if they encounter somebody who has a bag, they won't be completely freaked out. Just my opinion; enjoy your evening, everybody.

My younger son was 15 when I had my first surgery and gained a colostomy and a bag. We sat with him and explained the cancer and the outcome from the upcoming surgery. He thought for a while and then responded, with, “Let me get this straight. If someone farts in the room, we can be confident it's not Mom.”

A few days later, after he had done a bit of reading and asking a great many other questions, he came home with a draft of a new musical, “Phantom of the Rectum.” Kids are resilient. He was glad for the treatment that kept me alive. It's been 30 years…and counting.

My wife and I were upfront with my girls from the get-go. They knew I had UC since before they were born. They didn't understand what that was, but when I got diagnosed with cancer, we kept them in the loop. My wife and kids have all seen my stoma, and my girls are fascinated by it. They are 10 and 8 now and understand it quite well. They have actually educated people on it as well. I might be the only one, but my wife is very involved with my stoma and will actually change my stuff. I can and do change it myself at times, but she likes being another set of eyes to catch skin issues before they get out of hand.

Funny story, my girls met an elderly lady last weekend who has an ostomy, and when my oldest said that her daddy has one, the lady was able to relax a little bit more and wasn't worried about her bag showing under her shirt.

G-Day SA,

Sounds like you have a wonderful family, lucky man.

Regards, IGGIE

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My child is only a year old, but I have already started reading “Awesome Ollie” to him! He loves to play with the bear that comes with the book! The bear is very soft, has a little red button for its stoma, and a bag that is attached by a ribbon piece. My son loves to take it on and off the button! Lol

I got the book and bear off of AwesomeOstomy.com. The story is about a bear named Ollie that has to get a bag to help him feel better and starts living his most awesome life because of it! Hope this helps you with explaining to your kids what an ostomy is and how it makes their mom her most awesome self!

I love this! I don't have a child, but I'm tempted to get one anyway.

I have a 7-year-old. She was 4 when I had my first stoma; honestly, I was truthful.

I told her I was really poorly before and explained that I poo from my belly. Now she's asked me if she has to have one in the future. I said no, but kids are really resilient and understand a lot more than we think. I let my daughter name my stoma many times. When it bursts, she's run and got me a clean bag!