So when I left off, I was at the hospital and had just been told that I had UC. The biopsy was to make sure there was no cancer, if I'm not mistaken in my remembering (and there wasn't).
I'm pretty sure at this point in time I still didn't have a GI (gastrointerologist) yet. I was just seeing my family doctor. After my diagnosis, however, it was time to get referred to a specialist. I think my first specialist was a man named Doctor Yoo. The first drug I was put on was called Imuran/Azathioprine. This medicine was pretty risky. I was given a paper explaining all the possible risks, to make sure I knew what I was getting into. This medicine is most often used to treat rheumatoid arthritis and is also used in patients who have had organ transplants to make sure that the organs take. It was also found, however, it could be used for UC treatment. I've found that a good percentage of drugs used to treat UC weren't developed to help UC patients originally, it was just found that they can help them as well. As a side note, this is extremely frustrating to me. It's the most annoying thing to realize that you have a disease that all these amazingly brilliant people in the world can't figure out how to fix. Why would something like this ever be real?
At any rate...Imuran is an immunosuppressant drug. You see, my disease is basically my immune system attacking the lining of my colon, because it thinks it shouldn't be there. So it makes sense that they would use the same type of drug for UC as they do when someone has an organ transplant. They're basically trying to prevent the same thing from happening in both cases. At any rate, it comes along with a lot of scary side effects (as I would eventually learn that many UC medications do). Neoplasia, lymphoma, severe infections, bone marrow issues...It was scary to hear all the things that could go wrong with me because I was taking a medicine to make myself better. It's quite overwhelming to think that I could just be trading off some symptoms for others.
I was on prednisone during this time as well. Prednisone is a type of steroid. It also disables your immune system. Now prednisone is a terrible drug. If you haven't seen my posts on here from when I was taking it, let me give you a rundown. It gives you trouble sleeping, makes you an overemotional wreck, makes you fat, gives you cushings syndrome where parts of your body just start puffing up and looking ridiculous, and it completely fucks up your body. There have been people with UC that end up having to have hip replacements in their 40s because they were on steroids so long or so often that it completely killed their bones. It's obviously terrible for your organs as well. It's the worst drug that I've ever had to take in my entire life.
I was on these two medicines for a bit, but wasn't getting better fast enough. They switched me from the Imuran to a drug called Asacol, and upped my dosage on the Prednisone. I was taking somewhere near 60 mg of Prednisone a day, which is an insane amount. Asacol is part of a group of drugs with the main ingredient mesalamine. Mesaslamine is supposed to discourage the substance in the body that causes inflammation, therefore stopping tissue damage, etc. It is not, however, an immunosuppressant.
Steroids are not a long-term medicine to help the symptoms of UC. It works, don't get me wrong, but as I said, they're extremely bad for you. The reason I was on steroids coupled with other medications is so the steroids could get my disease under control quickly, and then the other medicines (which take a bit to start working) could start doing their job easier. Then what they do is taper you off of the steroids (it's extremely unsafe to just stop taking steroids, especially at high dosages) and then the other medicine is supposed to pick up where the steroids left off. ...I hope that makes sense to someone other than me...
It took a little while, but I started getting better! It was amazing. I was at home from school a little while longer, but then I got to go back. It was...more than weird. I had missed over a month. I still only weighed 80 lbs, and no one really knew why I had been gone so long. No one had ever heard of ulcerative colitis. It was embarrassing to have to actually explain my disease, so I told everyone that I simply had ulcers in my digestive system. Even though I was sickly skinny, and pale as a ghost, no one at my school got to see me while I was deathly ill. So to them, it seemed like I magically disappeared from school with no previous signs of anything wrong with me, and then I came back a little bit thinner, but that was it.
The rumor was that I had gone to rehab for an eating disorder.
And that was started by one of my friends.
High schoolers are bitches, especially when you're from a small town when there isn't anything better to talk about.
I busted my ass to catch up. I had to do what we were currently learning, and the current homework, while catching up on the month of learning and homework I had missed. I stayed up until all hours of the night studying, reading, and working harder than any of those people in that damn school had all year. I was happy to do it though, because I felt fantastic. I'm pretty sure at this point I was taking somewhere near 13 pills a day. I had to take an iron supplement because of all the blood I has lost due to my disease. I didn't even care though, I was healthier, and I was back to my life. It was wrestling season. I got to cheer my boys on and hang out with my friends, it was fantastic.
I definitely developed a terrible case of cushings syndrome though. I had not really been warned about the side-effects of my steroids. I had a lot of trouble sleeping because of them, and my face ballooned up like a chipmunk trying to hoard nuts for winter...it was gradual, but damn when I realized how bad it was, that was all I could see when I looked in the mirror. Maybe I'll dig up an old picture of it, because looking back, it really is hilarious. One good thing, though, I never had to deal with the mood swings during my first time on steroids. I was just so happy to be feeling good.
It wasn't all sunshine and lollipops though. The teachers didn't really believe I had a reason to miss school for a month. They wouldn't admit it, but I could tell. People made fun of me because my face looked funny. It was still rumored that I had left because of an eating disorder.
I was okay though. So what if I didn't get to have any senior photos taken of me. So what if a few people thought I looked silly, and was way too skinny. Honestly, both of those things were true! I didn't have to run to the bathroom anymore. I wasn't in pain. I was weaned off my steroids, and my face slowly returned to normal. I got back up to my normal weight, and my jeans no longer sagged off my body. I didn't have to hide under sweatshirts because I was too embarrassed for people to see how skinny I was. The asacol was doing the trick. I went off to college at IUB in the fall, and was ready to start a new and fantastic life. I wasn't perfect, but I was better.
At least for a little while...
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