What Would You Do?

I’m not looking for answers here. Just something that seemed like it might help me. If anyone does read this, however, I ask that you do think about the situations I give you. Most likely you’ve never gone through these things and it might be interesting for you to try and guess what you’d do. You never really know until it happens, though, as I have found out.

Let’s start at the beginning (where else?): What would you do if for the better part of the summer you were often in the bathroom having diarrhea?

I blew it off. It wasn’t constant just off and on. Everyone gets like that sometimes right? I took over the counter stuff and it worked until the next bout. But still, it wasn’t a big deal for me.

What would you do if after the start of school and an after school activity you came home, ate dinner, then threw it all up in the toilet an instant later?

Again, blowing it off. It was a hot day at school and I was tired and I had done a lot. God I even remember the exact date, September 18, 2006. I had come home from a 730 chorus meeting, which I didn’t even stick with, and was eating a really late dinner at about 830. Actually, I was a little upset at first but my mom convinced me that I was just overheated and overtired. I’m not saying its her fault or anything, because I was more than happy to believe her.

What would you do if it persisted almost everyday?

Then we all got scared. Especially me. It was happening to me, ho the hell could I not be scared?! We contacted doctors, of course, but it makes me mad to think that this really made it worse in the long run.

What would you do if your doctors were so sure of what you had and then would change it in the next week?

I was so damn confused. First they told me it was GERD, a form of acid reflux disease, so I was happy and just wanted to get it all away. Then the way the told me to eat and the medicine they told me to use wasn’t working. I went to a different doctor and he was positive it was Celiac disease, which is really a fancy term for allergic to gluten. So ok good, give me the medicine tell me where to get the gluten free food I’m not thrilled, but if it will stop this I’m good with it. Only it didn’t stop. Then the only thing I could do was ask myself: why?

What would you do if you had to be taken to the emergency room in order to meet with a doctor who could actually help you?

This is a longer story. We tried to get appointments with gastroenterologists at hospitals since my condition was quickly declining but everyone had 8 month waiting lists. One day in November we had a dress down day at my Catholic school. Apparently, it was a lot colder than I had judged and the shirt I was wearing wasn’t quit heavy enough. Oh yeah, and one of my teachers had every window open for one of my first period class so I was freezing! I went to my next classes shivering always and my fingers turning blue. I had an algebra quiz that day, though, so I said I’ll take it and then at lunch, which was right after algebra, I’ll go to the nurse and go home. That is exactly what I thought and its scary that I remember my exact thoughts.
So I was really sick. I went home and fell asleep on the lazy-boy chair in front of my big screen TV under a giant comforter still freezing. Then my mom remembered that I had a flu shot scheduled for that day. Obviously, I didn’t want to go but she took me not to get it but to talk about what was going on. When we went the one doctor who I liked out of the two who would see me came in. She had me lay down on the bench and she pressed her hand against my stomach. When she pressed my lower right side I winced and cried out in utter pain. She told my mom that she should take me to the hospital because, though she didn’t think it was, it looked like it could be appendicitis and it would get me in to see the doctor they had recommended.
So I go there and we were waiting in the waiting room for a long time. Then we got into the emergency area and a nurse came into my little clothed off section and handed me a cup and said, “You’re going to have a CAT scan. You need to drink two of these drinks. I know they taste bad, but you have to keep it down or else you’ll start all over again. When you’re done with this I’ll give you your second one.” She also told me that they had put it in apple juice. I always liked apple juice and didn’t think it could really be as bad as she said it would be. Damn, was I wrong. It was the foulest tasting liquid you’d ever drink. I can’t even think of a word to describe its awful taste.
I had the CAT scan and then afterwards the doctor who had the 8 month waiting list came into see us. He told us that he was pretty sure I had Crohn’s disease. He said that it was very rare for a person my age to contract it and I would need to have a colonoscopy to make sure, but he was 99.9% positive it was Crohn’s. I was relieved yet not. Why should this be the right diagnosis this time?

What would you do if the word “food” became synonymous with “liquid”?

How long was I on that stupid liquid diet? I don’t really remember but I know I hated it. First it was just a liquid diet so it was things like cream of whatever soup, ice cream, and anything that wasn’t solid food. Then it was clear liquid and that meant jello and broths were about the only things I could have. I fell apart.

What would you do when there finally seemed to be a light at the end of the tunnel?

It was Crohn’s! That was pretty much my reaction. He was so positive that I was just relieved that it would all finally go away, no matter what it was. Ha! Man, was I stupid!

What would you do if everything started again?

It was Thanksgiving Day. I was still on a liquid, not clear, diet for God knows why. I was on medicine and everything had been going good for a while. I was eating my Cream of Potato soup watching the Thanksgiving Day parade. Suddenly my stomach flipped inside of my gut and I ran to the bathroom but didn’t quit make it in time. I was moved to the living room and given a large pot. The heaves seemed endless. I’d spit up miniscule amounts of phlegm every minute with horrible aftertastes and terrible pain. All the while asking myself and my parents through angry, bitter tears, “Why is this still happening?! Why aren’t I better?! Why didn’t this work?!”

What would you do if all of the sudden it was hard to walk?

Walk? Yeah, that’s right walk. I began to limp. My upper right thigh had this excruciating pain for no reason. I chose to hide it. I was young; I still am but even younger then. I had just gone through hell I didn’t want to do it all over again. However, it reached a point where I couldn’t hide it anymore. We iced it and it seemed to get better and my mom called the doctor but he said not to worry. Shut the hell up Dr. Braindead.

What would you think if you heard the word surgery?

At first, it was mixed feelings. He said that for what I had it might not be necessary and that they would keep me in the hospital a couple more days and then send me home with an oral antibiotic but surgery might be needed in the end. It scared me at first but everyone said that it probably wouldn’t have to happen anyway. I distinctly remember thinking, why don’t you just do it now and get it over with? The way my luck is going I’m going to need it in the end anyhow. Aw, I was intuitive!

What would you do if walking became IMPOSSIBLE?

When my stay at the hospital was over I RAN out of that God forsaken building. I went home and took the meds. They didn’t work to say the least. My leg became unbearable and it had spread to my back as well. By the time I had to go back to the hospital I had to be taken in with a WHEELCHAIR.

What would you do if from then on all they tried to do to help was only causing more pain?

From here on most of the rest of my experience can be lumped together in one file titled CHOP (Children’s Hospital of Philadelphia). First of all, doesn’t a name like CHOP just scream, “This is where I’m going to be healed!”? Everything there was absolutely awful. I had to have a PIC line put in, which is a huge IV that has a tube that get directly plugged into a major artery. They said they gave me pain medicine but I don’t believe that they gave me enough because, even though I was only half there, I was still conscious of my surroundings and felt every God damn thing they did. I had to have more tests. More CAT scans with that stupid drink that I threw up all over my room only to find out that it was fine and that the second cup really wasn’t needed. There was a trip to an MRI where they didn’t have a wheelchair for me and I collapsed in the middle of a hallway. An MRI where they told me to lay flat, which was impossible because it hurt way too much to put my right leg down, don’t move, and tuck you hands under your head and have your elbows sticking up in the air. Then they put a giant plastic cover over my abdomen where something was jabbing right into where my pain was. I went I n the machine the way they told me to and my elbows touched the top of the machine, that’s how tightly in I was packed. They told me I was going to be given a button I could push if I needed to come out but I was given no such device. I was in so much pain in there tha after 45 minutes, apparently, I screamed and cried for someone to get me out. More trials and tribulations such as these occurred until my surgery in June of 2007.

What would you do if even surgery wasn’t the end?

I was given a feeding tube. Something I never want to experience again. It’s fed through your nose down to your stomach and you choke to death all the while it goes down. I had to change it multiple times as well because of throwing up. I went home with that thing for the summer but only ended up using it for the rest of June through mid-July because I puked again and I refused to choke myself to death all over again.

What would you do if all this happened when you were merely 14?

Yeah, what the hell is someone that age supposed to make of all this? I guess I just told you, though, didn’t I?

What would you do if it never went away?

It still haunts me. Not a day goes by where I don’t think about it. It has ruined me and I can’t get over it no matter how hard I try. Though it may not seem like it I really only described half the battle. There’s more to what happened then. There’s more to what’s going on now. It is an interminable war, one which I’m sure I will be defeated in, in the end.