My life with Crohn’s disease, Part 7

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I spent 25 days at Duke Hospital. During that time I was fed TPN (which basically means they give you nutrition through your IV) through a tube, a high amount of steroids, and underwent a number of tests, many of which required you to drink some awful tasting stuff.
My days were filled with lots of visits by the nursing and doctor teams. I would do school work with the tutor for a little while and my mom would help me take tests and answer questions. Then I’d probably take a nap, and a later perhaps entertain a visitor for a bit.
It took about two weeks to get back to feeling more normal. By that time, my mom and I started taking little excursions around the hospital. Just short trips at first, but then I was able to be unhooked from my IV during the day and could take the little tram to other parts of the campus.
One of the most important goals for me was to gain back some of the weight I had lost. That’s always a slow process. I remember when they finally allowed me to have normal food again and all I wanted was a big, greasy slice of pizza. I still remember how good it was, but I’m pretty sure it also upset my stomach. I realized I should take things a little slower, but that didn’t stop us from visiting the other part of the hospital that had a bigger cafeteria and better food! (By the way, hospital food has come a long way since then. If we wanted something good, we had to go out and get it and not rely on the food they bring to your room.)

Since I had a lot of weight to gain back, my doctor had me drinking supplemental drinks in addition to trying to eat a normal meal. I don’t know exactly why, but this was one of the most miserable things of the whole experience. It was hard enough to get my meal down, but then I supposed to be drinking several of these shakes a day. I actually at one point tried to have them give me an NG tube that I could connect to the drink throughout the day because it was that horrible to drink them. My mom talked me out of that one and, looking back, I’m definitely glad she did.
I was actually supposed to go home about a week or so earlier, but the night before being released, I spiked a fever for no good reason. When that happens, they have to keep you under observation for a whole day. This happened 3 or more times and kept pushing back my discharge date.
By the time I left, I knew pretty much every nurse on the floor, since I was assigned to almost all of them throughout the more than three weeks I was there. I left just a few days away from Halloween. I surprised myself by actually being a little sad to leave since I had been recruited to help hand out candy to everyone on the floor. I think I had almost started to feel at home by that point… which I’m not sure if that’s sweet or sad.
My time in the hospital taught me a lot of patience and thankfulness and dealing with frustration. Being in the hospital is what forced me to grow up to some extent. Even though I had this great support system around me, it was when I really had to start learning to take care of myself and listening to what my body is telling me.
The first few weeks of being officially diagnosed with Crohn’s disease were by far the most difficult I’ve ever had to experience. But it was just the beginning of my story.