Surgery Number 2 has been scheduled!

My second surgery has been set for July 5th! Although I had hoped the second surgery would happen as early as possible, I wasn't expecting it to be exactly eight weeks after the first. My nurse had given me the impression that I wouldn't know until after x-ray results in late June, but my surgeon's secretary went ahead and scheduled me. I suspect that July 5th is the date provided my x-ray results are satisfactory, so there is always a chance it won't go as planned. Details aside, I am really happy with the date because it will give me a full eight weeks to recover before I return for my fall semester at Georgetown. The general recovery after the second surgery to feel in great shape is three months, so I will only have about one month in school when I will still feel a little under the weather. Of course, it takes about a year or two to get the level of health I will be for the rest of my life (as my J-pouch learns how to be like a colon), but those first three months will be the hardest.

Every day I have been doing better, but I definitely have up and down days. I am walking faster and longer distances and I can eat more at once without being in pain.  My weight is still around 99 pounds so I have some work to do yet. I have been eating crepes, omelets, macaroni and cheese, french toast, lots of cheese and crackers, cookies....yummy things!  My energy level is much higher and I'm just much happier in general. Still, last night I almost went back to the hospital. I even had a bag packed because from previous experiences, once I start throwing up (and remember that would be in at least 7/10 pain at that point) it's difficult to think clearly enough to find everything I might need in case I am admitted to the hospital from the ER. To keep myself entertained for an unknown amount of time in a room with the company of some machines and a bed, I need my iPod, my iPod charger, my phone, my phone charger, a book, my computer, my computer charger, some New Yorkers, a toothbrush, a hairbrush, a change of clothes, etc...the one thing I don't need to worry about is medications because you are actually not allowed to bring medications when you are admitted to the hospital. They confiscate them! Instead, you tell them what you take and they have their pharmacy fill a prescription for you. They have a "cassette," essentially a bag in which they keep all your medications. They bring your cassette at the time of day you take your medications, watch you take them and then take them back. They wouldn't even let me keep my asthma inhalers with me in my room. I guess some people abuse medications. And I will admit that I cheated...I take a nasal spray right before I go to sleep so that I don't get congested and I didn't want to have to deal with the hassle of paging the nurse right before I went to sleep (I have to keep my freedom and independence!) so I snuck my nasal spray in and didn't declare it. Ha.

To get back to yesterday's ordeal, I had a blockage that resolved itself but I really really really felt horrible. It was a similar complication to what landed me in the hospital for the second time, for ten days, when my upper intestine swelled shut. The only thing to do is drink lots and lots of water, not eat anything and try to keep pain under control. In addition to tremendous nausea, the main symptom is terrible cramping that feels like someone is stabbing me over and over and it just takes my breath away. Then it subsides and comes back. Each time I get a cramp I have a gigantic urge to throw up. So yesterday I just kept on a regime of liquid vicodin, valium and zofran - the anti-nausea medication often used for chemotherapy that they give me in the hospital. As long as I can keep my pain under control, which means not reaching the point where I throw up just because of pain, and I don't throw up because that becomes the only direction food can go, I am happier at home than in the hospital. Plus I pretty much have my own pharmacy, including a pain medication 4X stronger than morphine (dilaudid). Still, I would never take it because it makes me breathe oddly and I would want to be under observation (it was filled by accident; it's not exactly like I want all these drugs around my house, so if anyone is thinking about stealing them, I am throwing them away tomorrow). I have a tendency to stop breathing correctly under high doses of morphine or dilaudid and they have to put an oxygen mask on me. In fact, the first thing I remember from waking up from surgery was someone yelling at me to breathe.

Once, when I was in the ER on super high doses of morphine, my dad was alone with me in my little-ER-room-without-a-door-but-with-a-curtain and my oxygen level started plummeting, which you can tell because they have an oxygen measure on your finger at all times hooked up to the machines that start beeping if the level drops. My dad ran to the nurses and they came in and started yelling at me. I (I don't remember any of this) opened my eyes really wide and then passed out again. So they put a mask on me.  Conclusion: no dilaudid at home for me! Luckily, I kept it together over about 12 hours of this silly business and the blockage passed.

I can't wait to get back to Georgetown and really enjoy everything it has to offer. Freshman year I was still getting the hang of things, and sophomore and junior years were very difficult for me on account of ulcerative colitis, even though I gave the impression that I was fine. I almost feel like I am going to college for the first time next year, except that I already know exactly how great it will be. I am finally the person who I should be but just couldn't be when every day was a marathon. Thinking that way makes me a feel little defeated because it's as if the disease beat me and I am not used to losing, but sometimes things are out of our control. Although when I was sick I did my best to have a positive attitude and take pleasure in what I could, I just could never feel genuinely happy. I didn't want to be alone because my disease made me feel so isolated when few people could understand what life was like for me, but I didn't want to be with other people because I was in pain and uncomfortable.

At the same time, if surgery had not been an option, I know that I would have found a way to approach life in the best way possible because there are plenty of really inspiring people in the world who do just that. I am incredibly lucky to have had a disease that could actually be cured. I have the luxury of looking back and knowing that my quality of life was not up to standard and be able to appreciate every day like a gift!

Cheez-Its...I really love them, and they were too processed for me to eat before. Now, every Cheez-It I eat is like a bite of the word delicious.