Hungry, Hungry Kiddo

Greetings. Today, I'm going to focus completely on Short-Gut and how I deal with it. First off, my case of SG is not nearly as bad as most. During my initial surgeries, the surgeons were able to salvage a little bit of every section of the small intestine (there are three) and most importantly the ileo-secal valve (that's how it sounds but, in all likelihood, is not how it's spelled) which keeps partially digested food in the small intestine until it's ready to enter the large intestine. Many people who had bowel resections lose this and that is the reason why they require frequent trips to the restroom. My parents and I have always said that as bad as everything was when this all started, from when I first went into surgery to when I finally came out, everything went right.

So on a daily basis, I eat a lot. Very frequent meals. But meals nontheless. They aren't huge meals, but they're definitely more than a snack. And I thought, I know I've said that before on the blog, but I doubt my point has been made. So today I give you A Day in the Menu of the Intestineless Wonder. This particular menu took place on Tuesday, July 21, 2009.

Breakfast: 3 egg omelet with ham, cheese, green onion, white onion, and tomato; two pieces white toast with (I Can't Believe It's Not) butter and (Sugar-Free) strawberry jam; Activia Light Vanilla yogurt; 100 calorie Little Debbie brownie.

Lunch: Taco Salad - ground beef, cheese, tortilla chips, lettuce, tomato, green onion, light sour cream, fat free Catalina dressing, hot sauce.

Second Lunch: 3 pancakes with light syrup.

Dinner: Macaroni and Tuna Salad - Macaroni, tuna, mozzerella cheese, hard-boiled egg, green onion, special sauce (light Miracle Whip, ketchup, and milk); two slice white Italian bread with (I Can't Believe It's Not) butter; three cookies.

Second Dinner: Cheeseburger - homemade hamburger, swiss cheese, light Miracle Whip, ketchup, wheat bun; handful of regular potato chips.

Third Dinner: Pizza flavored Lean Pocket; handful of regular potato chips.

Fourth Dinner: Taco Salad again.

Late-Night Dessert: Rootbeer Float - two scoops sugar-free vanilla ice cream, diet A&W rootbeer.

Beverages: 32 ounces of Powerade Zero (I prefer blue, because we all know blue flavors are the best in all brands of sports drink); 12 ounces of Diet Rite soft drink; 12 ounces of skim milk; 12 ounces of Diet Sunkist Lemonade (it sounds weird but it tasted delicious); 20 ounces of Vitamin Water 10 (they don't have blue).

As you can see, it's an extensive menu. Keep in mind, too, that I am a bum. Which means I wake up at 11:30 and go to sleep at 1:30. Which means I ate all of this in 14 hours. On most days I only have three dinners. I'm not exactly sure why I felt the need for a fourth on Tuesday. But that night I weighed more than I have since May 2008, and ten pounds heavier than my average weight just a month ago. It seems that the good home-cookin' is helping the cause. All of the meals I eat are made with the leanest meat my mom can find at the store and all "light" or "fat-free" ingredients. The most important part of a delicious meal, though, is the fresh vegetables. They turn an egg and cheese omelet into a southwestern omelet, nachos into taco salad, and a hamburger into ... well, a more delicious hamburger.

Keep Eating. -IW

Good News

So last time I posted, I was one day away from what I now know to be called a lithotripsy (that's how it sounds, but perhaps not how it's spelled). Basically they were going to send sound waves at my kidney to break up a large stone. I expected to be in a lot of pain for a long time, mostly because that's what usually seems to happen, and my urologist said I would be. I was obviously in pain the day of the surgery. I felt like I fell into a doorknob or something. It was really sore, but it didn't look like a bruise. It was more of a scrape. I was scabbed for about a week. Initially the scab was a little larger than the size of a coaster. The day after the surgery, I felt virtually no pain at all. A little soreness but nothing else. The next three days or so I felt as if I was passing kidney stones. But the percocet mostly killed the pain, and I have been pain free since then. Believe it or not, I think it is safe to call the surgery a success! Good news for me ... and my urologist.

Now on to more mundane matters of the short-gut variety. While I was away at school, and even the first few weeks of my summer at home, I usually got a stomach ache late in the evening, after dinner. Being a nineteen-year-old boy who tries to be perceived as normally as possibly, when I eat a meal, I eat larger portions than, say, my mother or sister would eat. And I always, of course, cleaned my plate. But for some reason in the last few weeks, I have found myself eating dinner, reaching the point where I feel content, and, instead of cleaning my plate on principle, I have been leaving food on the table. I must say, I have felt better at night. The grumbling that used to be a staple of post-dinner relaxation has subsided, allowing me and the fam to focus on what's really important: whatever we are watching on TV. Ha.

I have also been having other positive reinforcement lately. Since going down 20 1/2 months ago, my doctors have advised me to keep on eye on my weight. I lost about 25 pounds in the two days following the vovulus. In the six months after, I gained 20 pounds with the help of the Leash. In the two months after coming off TPN, I lost those 20 pounds. I have been almost completely level since then. Not losing any, but certainly not gaining. I was always slightly below the nearest 10 pound mark. Every once in awhile I would venture above that level for a day, maybe two, but would quickly drop back to where I was. But get this, it has now been over a week since I was below that mark. Which means, I think I may be gaining a little weight. Knock on wood.

My family says I look better too, even since coming home for the summer. They say my face looks fuller, and I am standing up straighter. The posture is one thing that really bothers me. Growing up, I was always the short one. Always. I was 5 feet even on my first day of high school. Naturally, I always wanted to be taller. This resulted in tremendous posture throughout my entire life. I was always doing everything I could to appear taller: back straight, shoulders back, chin up. But after my abdominal surgery, my abs were incredibly sore. So I slouched. Back hunched, shoulders rolled forward, elbows back. I have made conscious efforts to improve this for the past year, which is when I really started to feel a little normal again because I no longer had the catheter in my chest.

In sporting news, the Indians are a poor excuse for a baseball team. That's not so good news.

My sister and I are going to the midnight showing of Harry Potter tonight at the local cinemas. I remember the first time I became aware of the Potter series. I was in fourth grade: ten years ago. The fourth book had just been released, and I was just reaching the reading level necessary to read the early books. I read the first four in the summer between fourth and fifth grades. When the fifth one came out, I read it in about two weeks. Then the sixth one came out. For some reason I bought it, but never read it. I'm not sure why. Then it came time for the seventh book to be released, so I needed to read the sixth one. I read it in three days. In the town just north of where we live, they had a big Potter-themed festival culminating in the midnight-release of the seventh book. A few friends and I went. It sounds kind of lame, but it was so much fun. I got home around one in the morning, sat down, and read about 200 pages. That day, my mom, sister, and I were driving to Chicago for a softball tournament my sister was in. I finished the book during the six-hour ride. That was the summer of 2007, so I was in between junior and senior years in high school. So, yea, I read the seventh book in a twenty-four hour period, not to brag or anything. Ha.

I guess the point is, I've been a Harry Potter fan since I was in fourth grade, which was ten years ago. Since I am 19, that is more than half my life. And the final movie isn't set to be released until 2011. Which will make me 21. And I will be as pumped as ever to go watch a movie about wizardry in the fantasy world created by J.K. Rowling. And let's face it, it won't be released in 2011. It will be pushed back at least until the summer of 2012, which means I will be 22. I can't wait. Although, I would be more excited if there were another book in the series than I am about the movies. Not that the books are great literature. Trust me, they aren't. They're just creative, interesting, and engrossing. I doubt that a hundred years from now Harry Potter will be a staple in high school British Literature courses. But maybe that what they said a hundred years ago about Frankenstein and Dracula. "They're entertaining stories about monsters, but I would be surprised if they last past our generation."

Other good news about the new film: the Vatican approves of this one because one of the major themes of the final episodes is the good should and will overcome evil. So even though Rowling never hints at the existence of a transcendent being, Hogwarts is no longer a home to sinners destined to walk the primrose path to an everlasting bonfire. So good news for Harry and the lot of them. And good news for those who have heard the Good News: we no longer have to confess to enjoying a work of fiction that is not supposed to be real at all. I think that's about all I have to say for now.

Until next time, mischief managed. -IW

The Leash

My apologies for taking nearly two weeks off since my last post. It's not like I was even doing anything important instead. I was just watching a lot of tv and such. But anyway, I'm back.

I had a few friends over last weekend. We went golfing, grilled some steaks, and had a bon fire. One of them claimed that he hadn't been to my house since my graduation party last year. My party was on June 29. So had been quite literally one year. And then I realized something, a lot of things happened that week that have not happened since.

First of all, the party was supposed to be on Saturday, June 28. It was postponed because I was in the hospital that week dealing with my second line infection that month. This is why that week was so momentous. My doctors feared I would simply continue to contract infections every few weeks, so we decided to give life a try without TPN. They took out my Hickman catheter and put in a PICC line for my antibiotics for the next few weeks. I have not had TPN since. It has been one full year since my last round of TPN. It had become such a routine during the seven months that I was on it, yet it was forgotten so easily. Every night my parents would get the pump out, pull a bag out of the refrigerator, and call me into the kitchen for my nightly calorie fix. And every morning they would wake me up to unhook everything and get ready for another day.

Those who have been on TPN or have been consistently around someone on TPN realize the rigors of this task, the mental fortitude needed to deal with being attached to a bag for 12 hours every night. I used to call it the leash. Someone would call to see if I wanted to go see a movie on a whim, and my reply would be, "Sorry, I can't. I'm on the leash." Again, unless you've been on TPN or have been consistently around someone on TPN, it's hard to comprehend the mental toughness necessary to handle such treatment. Especially when you're 18 years old. I had been in school for 13 years, waiting for this summer, and it was finally here. I was supposed to be out running around, painting the town red with my friends. Instead I was on a leash.

This also means it has been one year since my last extended hospital stay. I was at Akron City Hospital for five days, I believe. Since then I've been to E.R.'s a few times as written about previously, and I spent one night the weekend before exams, but that's it. Nothing more than one night. Anyone who has ever been a hospital over night, I'm sure, will agree that no matter what illness or medical malady you are dealing with, you will never get better in a hospital. No matter what Jada Pinkett Smith's "HawthoRNe" leads you to believe, nurses don't seem to care too much about their patients. They come in and out once every few hours to see if you need anything. If it's easy to get, they take their time getting it making sure you know just how inconvenient it is for them; if it's difficult, they wait until their shift ends and dump it on the next nurse. It's just like any other job. And in the hospital, doctors are like the cable company. O sure, they'll come by, but it will be sometime between 2 and 7:30. They come in, talk like an auctioneer using words familiar to them but foreign to you, and they move on to the next patient. Hospitals are loud, hot, and uncomfortable. The food is quite simply awful. At Akron City, they charge $7.50 for the use of the TV per patient per day. That's right. $7.50 per day to do the only thing there is to do in a hospital.

It also means it has been one year since I was not the lightest person in my immediate family. Once off of TPN permanently, the scale dropped like the Cleveland Indians' win percentage. Needless to say, my jinxing of the Freshman Fifteen did not work. But I'm home now, and I eat constantly (re: like Brad Pitt's character in Ocean's 11). And I have a little less than two months until school starts at the University of Akron, and I am officially christened a Zip.

Tomorrow, I undergo shockwave therapy to blast the large stone in my left kidney. This one has never caused me any pain, but doctors insist that it's there and needs to be removed. I'm not going to argue. I have to be at the hospital at 7 tomorrow morning. I don't even think the sun will be up that early. Ha. Shockwave therapy is when this outrageously expensive machine focuses intense sound waves at my kidney and the sounds waves (hopefully) crush the stone to dust. With any luck it will be very fine dust, because I will have to pass said dust, or gravel as my urologist calls it. I say that the machine is outrageously expensive because it is not owned by any one hospital. It travels from one hospital to another as it is needed. It probably doesn't help that it isn't need very often. But tomorrow it will be in Akron, focused at the left side of my lower back.

The good thing about this procedure is that it is non-invasive. No cutting and no inserting of objects in places where I do not want objects inserted. But I will be put under, because apparently having sound waves shot at you is a lot like getting beat up in a back alley. They say I will wake up bruised and sore with a lot of blood in the urine. So it's like I got jumped and am waking up the next morning with no recollection of the actual event.

This better work, or I'm going to have to jump my urologist in a back alley and give him a piece of my mind in the form of my sister's new bat. Ha. Just kidding. I'd use my nine-iron. Ha. Just kidding, again. I'd use my driver. Ha.

Don't mess with me. -IW