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how to handle questions from young children regarding my daughters ostomy

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Posted 7/11/2010 1:40 AM (GMT 0)
I posted this on the UOAA site under the parents discussion board however there isn't much traffic on that board. I was wondering if maybe you guys could give me some advice on how to handle questions from young children regarding my daughters ostomy.

Hello,
I was wondering if there were other parents that could give me some advice on how to handle questions from young children regarding my daughters ileostomy. My daughter is turning 4 and she recently had her ostomy surgery (Nov.09). She is pretty confident right now and it doesn't seem to phase her at all. However she recently had an unpleasant accident while playing in those climbing things at Burger King. She fell and her entire pouch came right off. There was poop everywhere and she was in some pain too from the fall. I felt so bad for her. The little kids that were playing with her just kept asking what that red thing on her belly was. They were also curious about the "stuff" in the bag.
They were my friends children so they knew she was sick so I explained to them that this made her better. My daughter calls it her Rosebud but I could tell that only confused the kids. I also didn't want to tell them that the "stuff" in the bag was poop b/c I figured little kids will get grossed out and react like it's something that is really disgusting. I didn't want my daughter to feel ashamed so I just said that it was medicine, and the "pouch" helps protect her stomach. After I cleaned up the mess inside the play gym the kids went back to playing and climbing like nothing happened.
I just know that this is going to happen again and what if I'm not there..I'm so scared for my daughter. She starts pre k in September I am a mess just thinking about it.
Just wondering if any other parents can give me some advice, or just share some of your stories and how you handle it.

thank you in advance,
Posted 7/11/2010 4:04 AM (GMT 0)
well i know that kids that age think poop is awesome and the best thing to talk about! Why, i have no idea,but they do.
So i wouldnt worry about the kids getting grossed out about it at this point.

other than that i dont really have alot of suggestions, cause i dont have the situation you do.
I really hope that all goes well for her, but regardless of how you deal with the poo bag at least she is healthy!
Posted 7/11/2010 4:27 PM (GMT 0)
Hi Katie's Mom,

You will be amazed at how accepting children are; it's usually the parents that are the ones that ask the "quiet" questions.  I'm a teacher of young children currenty 2nd graders but have taught PreK & 1st and yes kids are naturally curious but they tend to be extremely kind and compassionate as well and are willing to befriend all children and help in any way they can.  Your daughter will have an amazing experience in school with wonderful, lasting friendships with some very beautiful individuals.  I wish you all the very best as she approaches this new journey in her life.

Peace and prayers to both of you,

Judy

Posted 7/11/2010 9:17 PM (GMT 0)
Hi Katie's mommy,
This is a concern for me as well. My daughter (now 4) was diagnosed with pancolitis last year. Surgery may be in her future, though I don't know if/how soon. If it's in her near future, I've been trying to figure out how to make her feel confident about the possibility of an ostomy (I think we would try an ostomy until some point in the future when it could be reversed if she wished as I don't want her to go through so many major surgeries). I have done things like pull up a page on the internet with pictures of someone with an ostomy and wait for her to come by and have a look and ask questions, which she always does. I then answer them so that she feels it's a normal thing that some people have.
It sounds like you have done a wonderful job with your daughter. The fact that she's confident about her ostomy means that you've instilled that in her. Before she goes to school, you might want to explain to her that not all kids know what an ostomy is and "feed" her answers to questions kids might have. I don't know if they'll know about it anyway. As finallyfree mentioned, they're likely not to care too much or even notice at that age. Good luck (i'm particularly interested in your experience because we're dealing with this as well).
Also, you might post on dragonpack as it's particularly for parents of children with IBD.
Posted 7/11/2010 10:21 PM (GMT 0)
Hi Killcolitis,

I was really scared too when the doctors told us that she would most likely need an ostomy. Unfortunately for us the decision was made for us since her health was deteriorating very quickly. She was hospitalized for two months and none of the medicines were working. She was diagnosed with UC last summer and 4 months later she was headed for surgery. The childrens hospital helped me so much in preparing my daughter for her ileostomy. They gave us an ostomy buddy, ( a little doll with an ostomy and some pouches). She loves this doll and shows everyone it and explains exactly what everything is. She even pretends to change her pouch once in a while. You should definitely look into this, I believe you can order it from Hollister.com, but I can look into it for you.
I am hoping that she becomes a very confident woman since the possibility for a reversal is not likely. Shortly after her surgery her doctors said that the biopsy came back and they are leaning towards Crohns and not UC now.
Only time will tell I guess.
I will try to keep you updated though on how things are going for her in school and all. and thank you for your suggestions, I am going to go through all of the questions that I think she will be asked and feed her the answers so she will be more comfortable.

thank you for all of your suggestions. ; )
Posted 7/12/2010 12:39 AM (GMT 0)
I love the doll! It sounds like a great idea. After I came home from surgery I told my neice that my bum is broken and doesnt work anymore. She was sooooo curious to see what I was talking about. She is 7. I showed her a bag and told her that I could now "fart" on her if she sat beside me.She has even heard it gurgle and laughed.  She thought that was hilarious. lol You know that age kids think spiders, slugs, and farting are hilarious...hehehe I wish you and your family all the best...Celine :-)
Posted 7/12/2010 1:26 PM (GMT 0)
Hi Katiesmommy,
Another thought would be to try to incorporate some role playing into your play time. My kids (aged three and four) are continuously role playing. If she feels she can answer the other children's questions she is more likely to feel in control as if she's teaching them about something as opposed to simply feeling different.
I've seen the doll and think it's great too. I might buy one . It's great they helped her at the hospital. We had a two week stay at diagnosis and it was terrible. Is Katie on any meds? Is she well otherwise? I know it's different for everyone but I'm wondering how such a little one would adjust to an ostomy.
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