How to tell your children

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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/29/2007 10:24 PM (GMT -6)   
I have a two year old, and when I got the ostomy he was 20 months old.  Well being that he is that small, if he and I are the only ones at home I have to take him in the bathroom with me, he doesn't mind, he usually just colors with his shower crayons, he was used to going to the bathroom with me (that is totally offtopic, I know) anyway he was 20 months when i got the ostomy, and the first time he saw me empty the bag, he just stared and stared, and said, "what's that thing called?"  So I said, "it's an ileostomy" and he said, "what's an ileostomy" so I started trying to explain it to him, and told him that is where I keep my poo.  And he said, "How did pooh bear get in there!"  Well I decided to quit trying to explain then.
Well after that for the next few weeks, everytime he would just stare and ask and I have no idea what to tell him.  He hasn't asked lately, but he still just stares and he say "Got to get that little bottle" (that I use to spray it out with water) then he says "got to empty it out" then "got to close it up"  But he still doesn't have any idea what's it for.  When I first came home from the hosptial he stayed at my grandmas for the first five weeks, because I couldn't take care of him myself not being able to pick him up, and he would ask then why and I would just tell him my belly was broken, and that seemed to work for a while.  Now he also wants to know how my belly got broken, and one day he tried to fix it with a play screwdriver!
How can I tell him what it's for?

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 6/29/2007 11:24 PM (GMT -6)   
 They're great for showing kids what an ostomy is.

Right now, he probably doesn't need to know the ins and outs of what an ostomy is. The explanation you've given him is simple enough for his age at the moment. As he gets older and begins to understand the body at bit more, you can give a few more details. Don't lie about it, tell him everything he wants to know and tell it to him in terms you know he will understand.

Once he starts to ask questions just answer them honestly and it terms you feel comfortable with and that he will understand. I think it will turn out okay as long as you can be matter of fact about it and not make it into a big deal. As the years go one on he'll probably forget you have one anyway :).

My brothers were 6 and 8 when I had my surgery and they were told all about it. One of my mother's fondest memories is of us getting me ready for a school camp. We formed a 'production line'. One of us cut out the hole in the wafer, the next one cut out the hole in the bag and the third one stuck the two pieces together.

Good luck!

I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 6/30/2007 11:25 AM (GMT -6)   
i hope he will not be hung up on it as he gets older. I just thought of this as I was reading your post My Dad had polio in one of his legs and as a result that leg is shorter than the other, but i could not tell you which leg, cause I never think of it.
And my husbands family is extremely overweight, and he told me that growing up he never really thought about it.
Thanks for your ideas!

Regular Member

Date Joined Jun 2007
Total Posts : 21
   Posted 7/3/2007 6:14 PM (GMT -6)   
I have a 6 yr old and a 3 yr old and I've been hiding my ileostomy. I dont know how to tell my children either. I dont want to scare them, or have them think that this is what would or could happen to them. Im scared of them being embarrassed that their mom is "different" or "freakish". So I just decided to hide it and not say anything. I know there will come a day Im found out but till then......

When its my bag change day I either do things before they wake up or wait till they they visit with their grammie. For emptying the bag I lock the bathroom door and just hurry as fast as I can go, preferably making sure they are busy and occupied so they wont be knocking at the door.

I wish I had an answer for you, Im sorry I dont but know you're not alone in not knowing what to do or how to say it.

Ps let me know if you come up with something


Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/3/2007 10:42 PM (GMT -6)   
i change the bag while my son is at someone else's house, lol.  Other wise he would be trying to play in the trash to get it out!  My husband usually helps me with it, it is much easier that way.
He has gotten better about ignoring it when I go to the bathroom I wish I could just lock the door but since he is just barely two I can't leave him by himself, and as Mom's know, you rarely get to go by yourself with a small child, lol.  Lately he has just been coming up when I first sit down, and saying, gotta get that little bottle, and then he will look and if it is full, (the bottle) he will say, 'got plenty in it" and if it is empty he will say, "uhoh it's all gone, gotta get more' 
Steph I don't think yours will be hung up on it, like I was saying about my dad, I never thought of him as disabled, or different.
I do worry that my little boy will just run up to someone and tell them about it though. 

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 7/6/2007 9:10 PM (GMT -6)   
My daughter has always known about my ostomy. She asked me what the red thing was when I was changing the bag and I told her it was my stoma. She asked why I had it and I told her b/c my bottom is broken. Also, over the years she asks the whys and hows. I've told her I'm very sick, my bottom broke, but my stoma makes it so I can do stuff with her and have a good life. I've made a point to list all the fun places we go and stuff we do together and how if not for my bag I could not do that. I've also told her that it is not anyone's business so she is not to discuss it with anyone. She has just accepts it. Occasionally she will ask again (she's young) and I remind her. Since its always been; it just is. Plus, when she was even younger she'd ask if she would get one too when she grew up or tell me how she will get one when she is grown up. Children are very accepting and will deal with your ostomy much better than you would think. Despite my daughters ability to blab, she has never blabbed about my bag.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 7/24/2007 6:23 AM (GMT -6)   
I don't have any little ones of my own, but I do spend a lot of time with my sister and her 7 year-old daughter, Linnea. They live 3 hours away and have a pool, so we always seem to be wearing our bathing suits whenever we get together. Her daughter always wants to be around me, so it's difficult to get a moment alone to change into my bathing suit. So far, she has never seen my pouch, mainly because I hadn't figured out a good way to tell her about it.

I liked justjenjen's post about telling her daughter that her bottom is broken. Linnea remembers visiting me several times in the hospital last year, so I can tell her that the doctor had to fix my broken bottom and give me this pouch. I could also tell her that I'm like a kangaroo now! Only instead of my pouch holding a baby, it holds poo :-)
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

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