Intermission

I had six weeks to enjoy having an ileostomy before I had my next surgery to remove it.  I explained earlier what an ileostomy is, but to rephrase it simply, an ileostomy is your small bowel brought to the outside of your abdominal area where your bowel waste then dumps into a receptacle that you can empty every three or four hours.  Having one of these takes a lot to get used to.  You have to apply a sticky backed flange to your skin around the ostomy site (the place where the small bowel comes out through your skin).  This sticky thing is called the appliance and the bag attaches to the round flange on the front of the appliance.

These can be tricky because the appliance can be finicky.  They often leak around the ostomy site or behind the appliance.  They have to be changed every three days or so and sometimes the actual bag itself leaks.  My skin was breaking down around my ostomy site, from the irritation of the appliance always being stuck to it.  I hated having to ask my mom to help me empty my poop bag.  It was a huge pain in the ass.

Things were settling down and I was sort-of returning to regular life.  I was eating lots and I had several trips out for ice cream and other special treats.  I was feeling stronger and gaining weight.  I also was wanting to play with friends.  One of my friends from school came over to play one day.  I made sure that I wouldn’t be emptying my bag while she was there, as I thought she might see it and tell all the other girls from school, and then they might make fun of it.  I wasn’t stupid.  Everything went fine during the play date but when my friend’s mother came to pick her up, she wanted to play again in a few days but this time at her house.  My mom said yes and thought it was a good idea. 

I thought it wasn’t such a good idea.  What if I needed to empty my bag there and I needed some help?  I’d have to get my friend’s mom to help me.  That would really embarrass me to have her help me.  I covered my bases and emptied the bag before my mom dropped me off.  But unfortunately, during the play date, it needed emptied.  I did some of it myself, but I needed help getting the clip of the bag back on so that the bag would be closed off.  I had to ask my friend’s mom to help me.  I stood behind the bathroom door and opened it up a crack to yell out to ask her to help me.  She came right away, but judging by the horrified look on her face when she saw the whole enchilada, I knew this was a big mistake.  She was not happy having to help me.  I could feel how disgusted she was.  She was clearly a fecal phobe, but she also was just judgmental.  The door was wide open and my friend was curious so she came in the bathroom too.  And if her mom was disgusted, what do you think her daughter thought too? 

I had no idea what would happen now when I went back to school.  This friend would probably blab her mouth to all the other girls.  I didn’t want anyone to know.  Besides, by the time school started, I wouldn’t have the bag anymore.  The play date was over soon and so was some of my agony.  But much more hurt and embarrassment would occur later when school started.  A few days later I asked my mom if the same friend could come over again.  My mother called the other mother but her daughter did not want to play.  I was heartbroken, but not surprised in a way.  I wanted to show her that I was still just me, that I wasn’t my bag, that I was still just the Heather that she was friends with.  But that’s not how nine year olds think.  She thought I was a freak and she probably didn’t want anything to do with me anymore. 

I was starting to realize a reality I had never even considered while I was in the hospital contemplating so many other things – that I could lose all my friends over this illness.  I had never thought about how people would treat me after the surgery.  I didn’t want anyone to know about the bag, because I knew they would think it was weird and funny, but I never thought about people not wanting to be friends with me anymore.  I had lost several things over the past three weeks but nothing would compare to how much I would lose and endure over the next few years because of my disease.  The aftershocks would be worse than the earthquake itself.