Thanks for visiting my page! I'm nine years old (at least I was in 2002, when I wrote this...now I'm 11!)and excited about telling you all about me. To begin with, I'm special and lots of people love me. My mom lets me do everything and she says I am her idol. I have a lot of fun. I am lucky, and I'm really happy 'cause I'm alive. Do you wonder about that? Well, the thing is, I have a special pouch on my belly called an ileostomy. I know that if I hadn't had an operation to make this pouch for me, I might *not* be alive, so for me, the pouch is my best friend.
You see, I have bowel problems. They don't move and I can't go to the bathroom. I call this pouch that I have a 'high bum on my tum'. I've had it for seven years, so I guess you could say that I'm pretty used to it. That's where I poop now, and it really helps me to feel good to have one of these things. I have to drink lots all day; I even have to drink my food, can you believe that?
People don't even know that I have lots of problems, but I do. For instance, when we went to wonderland this summer we had a special pass to let us go in the exit lines cause it was hot and I have to drink lots and then I pee lots and my bag needs to be emptied lots and I can get dehydrated...and then I need to get an IV. And I *do not* like IVs. Not one bit! People said mean things to us cause they thought that only people in wheelchairs have problems. Believe me, there are problems people have that everyone canít see and they are just as bad. One of the ride men thought we stole the pass and called the office. We had to go and get something special written on our pass that said not to bug us. After that we had lots of fun and I went on lots of roller coasters with my mom and had fun with my friend Eric.
Here's why I hate IVs. My veins keep 'blowing'...that means it's hard to get the needle in them and so blood escapes through the hole that the needle makes. This does not happen to most kids, but unfortunately, it happens to me! When it happens, my arms swell up so now they canít put the IVs there anymore.
I am an expert about hospitals. You would be too if you had to have as many operations as I've had. After twelve of them, we donít count anymore. What I've learned from my operations is that I donít like to go to sleep with the gas in a mask...I like to have the medicine in the IV instead. They wonít let me do this all the time but I had the choice once-but I didnít choose quick enough so they made me do the mask and I cried cause it was scary. I got dizzy and I spinned towards the machines and then it seemed like I went in the sky and then everything turned black and I thought I was going to die.
Here's how I learned to put up with scary feelings. My mom gave me a teddy bear that has her voice. The bear tells me that I am the bravest boy in the whole wide world and that we can get through anything with Jesus helping us. When I hug it, it talks and gives me kisses and scares the surgeons.
When I was little I was always in the hospital but now I know more and I donít have to go there all the time. It is an hour and a half from our home but sometimes we have to fly for five hours in a plane to a hospital in California. The good thing about California is Disney and a fireboat that I got to go on!
I have good friends. Lots of them donít know I have a bag but some do. They donít tease me but sometimes the big kids do (friends of my cousin). They called me Ďbelly button pooerí and it made me feel bad. I told my mom and she said Ďyou donít need friends like thatí. So I just stayed away from them. I donít like a lot of people to know about my pouch 'cause sometimes I get embarrassed. If I know them really really good then it's ok if they know cause I trust them. I know that they wonít laugh at me.
I get to play with my friends alot. I kinda like school. I am in an
ECO class. It is for kids with bad allergies and problems with
chemicals. I have really bad allergies. Now this is hard to believe but I'm even allergic to my hair. I have an epipen just in case I get a bee sting or get exposed to latex. (This is really a shot of special allergy medicine, not a pen that you write with!) There are five kids in my class and another one called Devin too (though we spell our names differently as you can see). We have been in the same class for three years with the same teacher. We eat our lunch in the classroom and we have our own bathroom there, too. Last year my teacher emptied my bag but now I do it - quicker than her, and after all, I *am* nine.
My mom had to get a letter from the doctor so I could bring my special electrolyte drink and my own chips into the movies cause I canít eat popcorn or drink lots of pop and I need my special stuff. Now they donít give us a hard time.
Here's another problem that I have to deal with. I get bad eczema and the skin on my feet breaks apart and bleeds and then I canít walk and my mom has to carry me. To help make my feet better, I wrap them in cream and put sandwich baggies on top of the cream. When I walk and I have the bags on they make a crinkle noise and I donít like this cause I think people will think its weird. When I canít walk I play computer games and watch movies in my den with my friends. Right now my feet are really good.
Want to hear about another medical thing that's annoying? I also have hypoglycemia problems (that's when I don't have enough sugar in my blood). I have to be very careful about what I eat, and I need to prick my finger to make sure the blood is OK...My blood sugar drops really quickly and I gets very confused and angry. I just can't help it. Everyone used to think it was an electrolyte imbalance (sort of a mixup of chemicals in my blood) 'cause it improved when I would drink the electrolyte solutions but now we know that I seemed better because of the high sugar content in the drink itself...
When I am in the hospital or sick I miss my friends and we canít play for a long time cause it takes me a long time to heal and I catch things easily. When I am home, I canít go in their houses cause they have pets and some of their parents smoke. That makes my asthma bad. I can only have lizards and fish as pets. My mom lets all my friends come to my house cause it is kid's heaven but sometimes I get to go in their house. I hate my allergies and I don't think people should smoke 'cause it hurts them and it could make them die.
I wonder about how things work, so I really like ĎInquiring Mindsí on TV. That's what it's all about. I wonder about bugs and what they think, too. Did you ever wonder about that?
I get to do everything that other kids do. Sometimes I donít get to do it as long but I still get to do it. I even ran a marathon for three kilometres and I was the first to finish.
When you think of me, think about how I can do a lot of stuff even though I have a bag! In fact, a lot more stuff than other people do who donít have a bag.
If you have any questions about me that I haven't answered, I hope that you'll write to me. Thanks for visiting my page!
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: November 14, 2004