My life with Crohn’s disease, Part 4

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The first few days in the hospital are a blur to me. One of the few things I remember is that they had two IVs in me that were both connected to pumps: one in each arm. Seriously, who thought that was a good idea to do that to a kid who has to go to the bathroom all of the time?! Needless to say, was not a good first night with already being exhausted and then having to put so much effort into just getting up to use the bathroom.
My doctor decided to put in a PICC line since they knew I’d be settling in there for a little while. That first day I had a fever of 104-degrees so we had to wait for that to go down before they could put in the line. It was late Tuesday night before they were able to get to finally get it in and I remember that being a horrible experience. The lady was not gentle or sympathetic and she has hence become known as the “Pickwick Lady.” (Not sure exactly how that came about, but I think I had just read Little Women recently and thought it was funny.) Safe to say, the “Pickwick Lady” was not one of my favorite people that I came across.
I also was too sick to have a colonoscopy the first couple of days, so it was put off until my third day in the hospital. I felt very scared as they were taking me to the procedure room. I had never been put under general anesthesia before (Yes, barium enemas are done while you’re fully awake!) and I remember whispering prayers as they wheeled me into the room and I drifted off to sleep.

Waking up from that was a nightmare in itself. I was in some recovery wing all by myself. I needed to pee and I asked someone if they could help me. All they did was take an awful metal bedpan and put it beneath me. So I’m lying on my back with this horribly uncomfortable thing thrust beneath me and told that I have to pee into it. I couldn’t even make myself do it. That’s so traumatic for a kid. And then nobody took it out from under me until I was taken back up to my room. I remember crying my eyes out as they took me back to my room because I had to pee so badly and the bedpan hurt underneath me and nobody would help me.
It was after that colonoscopy on Wednesday, October 6, that I was formally diagnosed with Crohn’s disease. At the time, the inflammation was focused at the juncture of the ileum and the colon, thus the diagnosis of Crohn’s over ulcerative colitis. I don’t remember actually being told that it was Crohn’s disease, but I definitely wouldn’t have had any idea what it meant anyways.
Those first few days were not the easiest. They put me on an all liquid diet which basically means only eating broth. And honestly, broth is too good a word. You’re basically eating water with a bouillon cube it in. The first day they gave me beef broth. I was able to gag it down, but I can still remember how horrible it tasted and the fact that the next morning I could still taste it. The next day they gave me chicken broth. I got a few spoonfuls down before I started gagging and threw it all up. After that, I refused to eat any more broth so they eventually agreed to put me on a bland diet.
Beyond that, I was also on TPN (which means they are giving you nutrition through your IV) to help my body absorb all of the nutrients it needed. That’s one of the most difficult parts of having active Crohn’s disease in your intestine: even if you are eating a normal amount of food, after it is initially broken down in the stomach, the food starts to irritate the affected parts of your intestines so they just push all of the food through without absorbing anything out of it. It’s the same effect as being anorexic and your body is not getting what it needs to survive.
Slowly but surely, after being fed through an IV and getting a blood transfusion, my body started to rebuild itself and pull itself away from the edge.