This is it...

[tropicsgoddess]

Boo pain! Horray for no more ostomies! (couldn't resist....http://www.youtube.com/watch?v=v2S_UOHlueY) Feel better PS. here's plenty of yummy goodies and hugs for ya.

[Princess-Snake]

Updates

Sorry I haven't been here for a couple of months, but things have been pretty busy. After the ostomy take down surgery, I had to stay in the hospital for a while. The estimated time I would be in was one week. I ended up staying for three weeks. On the last day, they removed my IV line (quite painfully I might add) and I hae been IV free for over a month now. My formula feedings have been reduced from 22 hours to 13 hours at night. I'm still on a diet, but my food choices have been increased. The only foods I'm not allowed to eat are high fatty foods and sugary foods. My blood pressure has gone up, so I have to take medicine for that as well as medicine for my high cholesterol. They think some of my other medicines may have increased the blood pressure and cholesterol. Lately I've been walking outside and doing a bit of weight lifting for my arms. Don't be so impressed, they're only 2 pound weights. Well, that;s all for now.

[AdminAssistant]

Yay! Sounds like things are looking up and up and up! Glad you're able to eat more food, hopefully they'll figure out the blood pressure/cholesterol thing, soon!

[McGoddess09]

Don't worry, you'll be able to lift 50 pound weights in each finger soon.

[Dips]

I've been thinking of you, Princess. I'm so glad it sounds like everything is moving in the right direction, even though I'm sure it seems too slow.

IV-free for a month is terrific news; it must be such a relief. I hope I'm reading this right and the fact that you've switched to night feeds means that you're now pump-free for 11 hours a day.

[Princess-Snake]

I've been thinking of you, Princess. I'm so glad it sounds like everything is moving in the right direction, even though I'm sure it seems too slow.

IV-free for a month is terrific news; it must be such a relief. I hope I'm reading this right and the fact that you've switched to night feeds means that you're now pump-free for 11 hours a day.

And the pump goes in a small backpack so I can carry Ozzy with me. I named my pump Ozzy after the formula Osmolite (I know I'm not spelling it right) Is that weird?

[Megg]

Not even a little weird. I am so glad to hear you are doing okay, I was hoping things were well for you. *hugs*

[Dips]

I named my pump Ozzy after the formula Osmolite (I know I'm not spelling it right) Is that weird?

If it's weird, it's a good weird.

Here's to hoping that someday Ozzy will be retired.

[Princess-Snake]

It's been a few months since I last updated and I'd like to tell you about the great success I am having with my bowels. I'd like to, but I can't. Unfortunately, things have been going down-hill this past month. At the beginning of August I started having what can only be described as explosive diarrhea. The next day, I felt tired, weak, and blah. I checked my temperature and it turns out it was 101.6 F. I call my dad, who calls the hospital, who calls me, then calls my dad, who then calls me and tells me to pack my suitcase, I'm going to the emergency room. An hour and a half later, I'm in the emergency room. 20 minutes later, they call me back. 9 hours later, I get admitted and a room upstairs. They collect their blood samples, urine samples, and stool samples, run their tests, and determine I have a roto-virus in my intestines. So they stop the formula and put a temporary IV in my hand. They then start up antibiotics to get rid of the virus.
My dad tells the doctors that he was supposed to schedule a routine colonoscopy that month, so could they do one while I'm here. They agree and prescribe me a bowel cleansing agent for me to take that night to prepare for the scope the next day. Let me go off topic here to say that if your doctor prescribes you a bowel cleansing drink called GoLytely, the name is a lie! I don't know who's the genius that came up with that name, but it most certainly does not make you GoLytely. It makes you run for the toilet every 45 minutes and stay there for at least another 20.
Anyway, I go in for the scope, and they can't flush the IV in my hand. They have to make a new one in my shoulder. When they finally get that situated, they put me right to sleep and stick a camera up my butt for a butt biopsy. And they found that everything is normal. HAHAHAHAHA! Just kidding. They find signs of rejection. So they send the biopsy samples for immediate analysis and the samples say there's absolutely nothing wrong with my intestines. HAHAHAHAHAHA! No. The samples say my body has just wised up to the fact that there's a bit of some DNA in there doesn't look quite right. So they do what most bodies do and sent my immune system to attack it. So to summarize, not only do I have a virus, I also have rejection.
The doctors speculate the virus came first a while ago and then when I took my immune suppresants, it made it hard for my body to absorb them, thus causing the rejection. So they put me on a 2 week rejection switheroo drug to be inserted through my IV. Problems? Oh yes. The new IV in my shoulder is starting to swell. So they decided to send me down to radiation to give me a more permenant line. They give me mild sedation and surprisingly, I don't object to poking and prodding and otherwise hysterical inducing pain. Oh, they put me back on TPN since I'm not getting any nutrients through my formula and they've put me back on my bland only diet. So for the next week I'm served chicken broth and jello until I insist to the doctors that I be given a bit more variety in my meals. Relucntantly, they gave me a turkey sandwich (which is completely bland by the way) and when they saw I wasn't just going to spit it back up for no reason, they let me add more (bland) foods to my diet.
Fast forward two weeks and the next colonoscopy reveals that the rejection has reversed itself, my stool sample has no trace of the roto-virus and I'm free to go home. HAHAHAHAHAHA! So close, but no cigar. Despite the fact everything's been reversed, I'm still getting fevers. They suspect an IV line infection, so they pull the current line and replace it while I'm under mild sedation. I didn't respond very well. I was so hysterical, they nearly terminated the procedure until they gave me some stronger sedatives. Then all was right with the world. Or not. Despite the new line, I'm still getting fevers. Surprisingly, the blood tests they do daily show no trace of an infection. I wanted them to figure out what was wrong soon, because if I had to hear, "There's a hundred and four days of summer vacation then school comes along just to end it" one more time, I was going to chuck my big book of female serial killers at the tv. Just as I'm taking aim, the doctors come in at "Oh, there you are Perry." They hypothesize that the sugar in the TPN is attracting some bugs in my line and the reason they're not coming up on blood tests is because they collect the samples after the TPN has been shut off and flushed away. So they decide to pull the line out and put me back on the formula. Two hours later the nurse and doctor come in with a pretty strong sedative just as I'm aiming at "You get the limo out front. Oooh. Hottest styles, every shoe, every color." They inject the sedative, and since the line is fairly new, they yank it out in about 30 seconds with absolutely no pain. A lot different than the last time a bedside line yanking procedure was in place. It was painful, the sedative they gave me didn't do shit, I was begging for them to stop, there was blood everywhere, and the doctor had to give me frequent breaks so I wouldn't pass out from the pain. Actually, passing out might have made things a whole lot better.
They give me the formula at 40ml an hour for 22 hours. That is so below what I was getting before this whole mess. I was going 125ml an hour for 12 hours and I did perfectly fine. Unfortunately, my intestines are now weak little girls who can't handle the "big kids games" They finally sent me home after a month's hospital stay. The line's out, but I still have to take my formula at 40 an hour for 22 hours. The only reason it's not 24 hours is because I have to take my immune suppressants twice a day and you can't eat or drink anything for an hour after you take them.
I was supposed to attend classes this semester, but due to the health problems, I had to drop out. I'll try again when the spring semester comes. So, that's basically the updates for now.

[AdminAssistant]

Oh, dear. I hope everything turns around for you and you're able to start school in the spring!

[RootedPhoenix]

I hope you get better soon. *offers hugs*

[Der Cute]

Dagnabbit! I was hoping everything was hunky-dory and working happily ever after.
Oh well...looks like your intestines got a bit of a tune up there.

Glad to hear there's no more rejection and no more infection (that rhymes..)

Hope everything heals up happily and doesn't argue any more.
And that you can eat bland solid foods soon.

Cutenoob

[Dips]

Princess, I don't know what to say. The universe needs to fuck off and leave you the hell alone.

I'm thinking of you and you know you can PM me if you need to vent, kid.

[Plaidman]

Ahh sorry.

But you'll heal up. It be fine. Don't worry. Besides, world owes you something great after all this!

[Princess-Snake]

So, it's been a couple months since I last updated. I'm eating a variety of foods compared to the bland diet I was on after the rejection. This year's Thanksgiving was the very first one I was fully able to enjoy. The years before I was just merely sampling and tasting before the transplant, and last year I was still figuring out this whole "eating properly" concept not to mention food wasn't exactly appetizing at that moment. I've got a job. I am now a secratery/operator at a tour company. The company sells tour packages of Greece (my boss's home country), Turkey, and Isreal. My job is to insert hotel rates, cruise rates, create itenary's, and answer the phone. Yes, I still get sucky customers, but at least it's on the phone. My boss's father owns a math tutor business literally right in the next office. Her (my boss) mother owns a greek restaurant just 15 minutes away from the office building. One of her brothers works at the restaurant, while the other works at tutoring. So along with the travel work, I occasionally do some work with the restaurant and tutoring. The family is great friends with my family, so I get spoiled a little bit at work.
The intestines are fine. I have to have scope done every 4 weeks and blood tests every 2 weeks. Ozzie the feeding pump is running 13 hours at night. I've been taking some belly-dancing classes at the restaurant every Thursday. The 10th will be the last day for class and unfortunately I'm going for a scope that day. Which means when I get back and take my class that night, I'm going to be doped up pretty good. Yes, I've belly-danced the same day as being under anesthsia before. I was actually pretty well coordinated. The doctor however was very confused when after explaining to me I would be uncoordinated for 24 hours, I asked him, "Can I belly-dance?" He looked into my dad's eyes and pleaded for help using his own. Thankfully, my dad granted him mercy when he explained it was a class I was taking. That day was very weird the moment I walked into hospital doors, but that's for another post which I might post later. Not sure yet. In the meantime you can watch and/or dance to this song which is on my practice cd. http://www.youtube.com/watch?v=-_2gW3zwMMQ