Procedures

Count Back from a Hundred
Still Remember the Taste
Tube in my Nose
Tests
Treatments
Distraction
Colonoscopy

Crohn’s Disease          Ulcerative Colitis

Count Back from a Hundred
What I found out, and what should go straight to kids’ minds, is this: tests like endoscopy and colonoscopy might be scary, but don’t worry about it- you won’t feel a thing. This is what’s going to happen: you count back from a hundred, and you’ll pass out, and then you wake up and it’s over. You don’t even have a dream it’s that quick. The thing is, the night before you’re going to have to drink something very disgusting and during the upper GI you’re going to have to drink something very disgusting. I threw up the first time and was going to the second time, but you have to have it. It will be over as soon as you can finish it, but you need to have it so they can find out what’s wrong and places to fix it, and if they do you might never have to have that test again. But I went through both of those drinks and they tasted so bad!

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Still Remember the Taste

Preparing for them was one of the hardest things and I actually still remember and talk about it. I was just talking to one of my friends about it today because she’s going through a similar situation. I still have the memories of having to prepare for the colonoscopy and endoscopy because I wasn’t allowed to eat anything for a couple days beforehand and then I had to drink something to flush out my system. I still remember the taste of it and still if there’s a specific taste of something it reminds me of that, and all these memories come rushing back. So it was one of the hardest things. When I went into the hospital that day for the test I was just so worn out; that was the moment when I felt like giving up. So the colonoscopy, even though a couple of hours later I had an answer, was sort of the epitome of everything.

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Tube in my Nose

I hated the colonoscopy because I had to put that big tube in my nose with that Golytely stuff. And I hated being in the hospital overnight because it was scary.

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Tests

Before diagnosis, I had to go through a lot of tests: an endoscopy, a colonoscopy, and a barium test. The preparation for the colonoscopy and endoscopy were really bad. The worst part was drinking the fleet the day before; the actual test wasn’t that bad. After the tests I had a lot of stomach pain because a lot of air is put into you during the test. The barium test was really gross. The barium is really chalky, that was the worst part of it. I had to chug it and block my nose. But the fleet is the worst.

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Treatments

There have been so many treatments; some are great, and some are bad. It’s nice to know that even if a treatment doesn’t work, they’re not going to give up. They’re going to keep trying.

A few years ago, I started doing injections every week. It hurt, and it was kind of strange to self-inflict pain, but the shots worked really well.

When I was six or seven, I had some sort of IV; I don’t remember exactly, but I had to carry it in a pouch around my waist. It looked like a little tiny bomb. It was hard because it was so conspicuous. I think that when you’re six, you don’t really like people to know how desperately sick you are, and that was a really big indicator. I was fed off of NG tubes for a month, and I was lucky because I could still go out in public with them rather than staying in the hospital. But that was sort of hard because everyone would look at them.

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Distraction

I had so many tests done: so much blood work, CAT scans, the barium. It was pretty overwhelming. What I did was I’d try to distract myself. When they’d come in and tell me that they were going to do a test, I’d try to get my mind onto something else. That would usually help, but there is not a lot you can do to take all the fear or worry away. I would get on the phone with someone or play a game with my parents. It’s best to distract yourself.

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Colonoscopy

When I first started getting treated I was pretty nervous. I was uncomfortable with my surroundings and the fact that I had to talk about all of this again, but I’ve gotten over that. It’s pretty smooth now.

I had two colonoscopies; that was about it. I didn’t really know what they were until people explained to me what was going to happen. I was kind of afraid and worried about it, but I ended up falling asleep, so it was fine, basically.

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