Being Home

Now I am home and it has been amazing. I get to eat again, gaining some weight. I think I am about 115 haha 2 pounds yes! I can eat food without being in pain!!! That has been the best part. I eat food without worrying about the consequences of pain later. There are still limitations on what I can eat. I am on a low residue diet, which means I still should stay away from fiber-y foods like fruits and vegetables. I have to stay away from fats (which I think is silly because I am trying to gain weight here!) and should be careful of alcohol still until the second surgery is over. Even once the second surgery is over it will take awhile for my body to adjust to the change (no large intestines). I will have to eat different foods, doing trial and errors making sure it’s okay.

The biggest concern is now is bowel obstruction. Because the small intestines is smaller than the larger the food I can eat can get stuck and cause a blockage. And if the blockage isn’t fixed that could lead to a permanent stoma thingy/ostomy bag!!! And I just would not be okay with that. So I am being very careful about my food.

My mom has been very protective of me. The first day I always had someone around me and I wasn’t allowed to walk by myself. Second day she was a little more lenient. My mother’s parents came to stay to help out with things.

However today they left. My mom still hasn’t let me climb the stairs to my room; thus I am staying in the back bedroom—which is fine there is a t.v. in here. I am more than capable of climbing stairs. I walked up and down from the basement today to show my little sister what the old good video games were. I have been passing my time by playing wii games with my ten year old sister haha and also watching the t.v. series on dvd, fringe, madmen, and 30 rock. I am thinking of starting to watching Lost too.

My mom had promised that I could go visit my friends at college on the 11th but tonight all the sudden she decided otherwise. I mean I can understand why she won’t let me, it’s just that I wish she hadn’t gotten my hopes up and all because she said I could since the day we left the hospital. She said that I would probably be fine to go down and visit then. And afterwards we were talking about it as if I were going. I am extremely disappointed : ( maybe she will let me visit later in the month. I miss college and all my friends. I love you all so much!!!

What its like in a hospital

I am going to describe what it was like to stay at the hospital for ten days. You lose track of the time of day and the day of the week. It doesn’t matter; it’s all the same. Vital signs are taken every few hours. People are constantly in and out of your room never letting you rest. Blood was drawn every single morning between 4am-5am. Two teams of residents would start coming between 5:30am-7am. Then I had two surgeons. They would come in between 8am-10am. And then I had a nutritionist that would come every day—because I didn’t eat food for 11 days. Also an infectious disease doctor would see me every day too.

The I.V. would beep and I would have to call the nurse. I always had to lie on my back and the beds were super uncomfortable. When I got home I counted 16 pricks (that I still could see) on my arms. My arms are still sore even though I have been out for three days. I had at least 6 different I.V. sites. It was changed every 3-4 days. At one point I had two I.V.s because I was getting PPN which is partial parenteral nutrition. I only got the nutrition through my viens for two days though because I got phlebitis, an infection in the vein. So thus, I have lost 15 pounds since the surgery. I originally weighed about 130 lb and now I am 113 lb at 5’8” yikes! But I will soon gain it back.

In the room next to me, there was a woman with dementia who had just gotten a tumor taken out of her stomach. She would scream and scream at night. She yelled things like “help us! Don’t let them near us! Call the police” lol kind of entertaining, except when you tried to sleep. Then when she moved out after like 5 days I got an orthodox Jewish man. He was better; although one night there were like 10 men in his room with like instruments and they were all singing and playing music in the evening really loudly. I was just like “wtf” haha but it was funny.

I never want to go back there! Even though I know I have to again soon. Hopefully in a month (probably longer) I will get the second surgery to reverse the stoma (the small intestines that is on the outside of my skin currently). The surgeons say it should take less time to recover from this surgery—but I spoke to someone in town who said it took just as long to recover from the second one as it did from the first one.

I'M GOING HOME!
I'M GOING HOME!
I'M GOING HOME!
YAYAYAYAYAYAY!

So I have lost count of the days. sorry i have not written in a long time i have not been feeling my best. still in the hospital. lots of things can go wrong. no one prepared me for how painful this surgery was going to be.

yesterday was my 11th days without food and i finally ate. I only got food through my i.v. for like 2 days because it cause infections in two of my veins.

today is day 10 in the hospital :( and i want to go home. lets see what has happened since i have last written. i think the day after, the reason i stopped writing was because i lost about 3 cups of blood i will spare the people who would rather not know where the blood is coming from. but you can guess. a little is normal but not that much. actually it has happened everyday since, except not to the extent of three cups.

i did a ct scan like 4 days ago. but got to do another cat scan where i had to drink this nasty liquid (keep in mind the most i had to drink at a time was like a tablespoon of water) and i had to drink like half a liter of it without throwing up.

Oh yeh the day after the blood in the middle of the night I randomly starting throwing up green stuff. that was weird. I felt like an alien....i mean who throws up green stuff. (a really sick alien). So i continued that on and off for the rest of my day. thus preventing any blogging, sry.

recently my fever has been 102.5 and pulse like 140 for no reason. So they are trying to figure that out. they thought i might have a gall bladder stone. so i got an ultrasound. (oh and i have gotten 2 chest x-rays). all was clear.

however in that latest cat scan they did find something. maybe an abscess or something in the J-pouch. which is not good. they will either have to go in and drain it or i'll use anti-biotic. anyway i get tired really very quickly from typing and talking so i'm gonna stop here.

I want to go home!!

Fourth day

Constant pain from the hematoma. No liquids or foods. I started food through my I.V. The food for the I.V. was ordered at like 11am I only got it at like 11pm. Stupid hospitals. I haven’t had food since last Tuesday afternoon, it Monday. But I am nauseous so I don’t really mind not eating. The day was pretty okay, pretty quiet. Just slept a lot. Walked around a little. My mom stayed the night again thank goodness I love her so much. She is the reason this is not that bad. She got me a little cute kitten stuffed animal and a stress ball so I can squeeze both when in pain lol. Poor kitten.

One surgeon checked on me like three times looking at the hematoma. Then he finaly said, “you know CAT scans aren’t 100% right all the time, and if it is part of the intestines sticking out because of a popped stitch I can fix it quickly. If it is a hematoma I will just drain it.” So less than 30 minutes later I was in the operation room being cut open again.

When I woke up I felt better than I have ever felt in the hospital yet. It was a hematoma but he drained it. Later the pain rose again, probably after the anesthesia wore off but it is so much better than before.

I slept and my mom made my dad to stay the night to help. Lol he can help and he sort of did. But if I woke up in the night he mostly just made me call the nurse and wait anyway. But he did make me wait for the nurse, I guess that is good. And he snored a lot. Haha oh well. I think I am getting better and I won’t need anyone to stay over soon. I just have trouble getting in and out of my bed…and walking. Lol but I am really good at sitting :D

Third day here

Sorry I haven’t written in awhile but the past 2 days have been really awful. (if I hadn’t promised not to curse on the internet to my mom, this would probably have a lot of cursing in this entry). So, I was in intense pain at 5:30ish am and they said they couldn’t give me any more morphine or my PCA (the button that gives me my pain killer, stand for patient controlled analgesia). So they gave me an oral pain killer called dilaudid. NEVER TAKE IT! I got an awful migraine and extremely nauseous. One of my surgeons came in and found out they had taken me off the PCE and yelled at all the intern and people hear and I got it back.

Apparently there was a miscommunication. The other surgeon wants the patients off the pain medicine as soon as possible, but when I saw him he said he didn’t tell them to take it off that early. But his interns and residents who I was complaining too did nothing when I complained. They suck so much. So anyway that was awful. But soon after I got my pain medicine one of my friends should up!! And I was so happy!! She brought me the best things lol a red feather boa, magazines which I didn’t have any of yet, really nice chap stick, a miniature diva character lol, my favorite candies (which I am still waiting to eat!!), red nail polish, and of course my favorite musical of all times (at least the ones that my high school played) a DVD of Joseph and the Amazing Technicolor Dreamcoat. It was just amazing. It really cheered me up :D

My aunt and uncle, who are both doctors, also came around the same time. They brought me some flowers. Actually I forgot to say I have a lot of flowers! There is barely enough room to put them all, it is really nice cheers up the room.

After they all left I think I fell asleep for like 2 or 3 hours, and woke up to see another uncle who came to visit. I think it is hard to see people so sick so it was nice that I had a friend and family see me even though it’s tough for them to see.

Anywho, after he left I was still really nauseous from the evil dilaudid, which lead me in to wench and eventually throw up the few liquids I had during the day. The second I threw I was like “oh dang-it, this isn’t good. I feel something bleeding.” Looked down and something was causing a big bump to stick out below my belly button. I curled up in pain and the night was long.

The residents on call looked at it. Then they called in the chief resident, who then called in both surgeons from their homes. (this all took like 3 or 4 hours). I was doped up on so many pain killers and it didn’t really help so I was doped up and couldn’t talk or move on top of being in pain plus nauseous. Not a fun situation. They decided to send me to do a CAT scan to see whether it was a hematoma (a broken blood vessel that causes internal bleeding, which goes away on its own, or a popped stitch which would have undone part of the surgery which would be really bad).

An hour later, around like 10:30pm I finally get to the CAT scan, everything is so slow in hospitals. Turns out it was just a hematoma. I used to get shots in my belly every 8 hours to prevent blood clots. These shots could also be a factor to why I got a hematoma. Now I am not getting them anymore.

That night I was awakened probably every 2 hours. I got an EKG because my heart rate was high (I could have told them that I was in pain, duh my heart rate was going to be elevated). Then I got blood drawn, then vitals, then residents came by. It was frustrating. Now I learned to sleep through all the unimportant things and only wake up for my doctors.

The day after surgery

Day after surgery sucks more

So that morning I was up at 1am 3am 5am and finally just stayed awake after 7:30am. Doctors came in and spoke to me, as well as fellows and residents, and a nutritionist. They told me that I should try walking or sitting in a chair today. And if I kept liquids down the following day I could have soft food maybe. They were also switching the pain medicine to oral Percocet and something else that was less strong through my I.V. later in the day.

So I attempt standing and walking with the help of three people and oh boy was that hard. I walked about 5 feet then the pain was so much I took more morphine and fell asleep. Pain is all in my abdomen. There are band-aids covering the scars so I have not seen them. There is also a tube coming out of my belly to drain fluid from the surgery, it’s like a reddish bloodish liquid. And I have a catheter because I am unable to walk yet, as soon as I can walk I get it taken out.

So my mom and dad left during lunch time and I was feeling pretty well. The lunch people brought me a piece of bread and this soft fish and I was like I can’t have this and they told me well your doctor said you can. I was confused but too hungry to question and ate my meal ---although slowly and cautiously (turns out I wasn’t suppose to have eaten it yet and caused pain :/

Anywho I decide to walk on my own. This was a bad idea because they stopped the morphine and when I got back to bed I was so weak and tired and could barely press the button to call the nurses to help me. Later that night, I tried to deal with the pain but couldn’t so they gave me some more morphine.

They also filled my body with air during the surgery. It doesn’t hurt it just feels like there is bubble wrap under me lol like by the chest and hips. So that entertained me for awhile.

Tonight I managed to walk another like 10 feet and I sat in a chair. The pain is almost intolerable but you know it could be worse, they aren’t giving me as many pain medications now and even when they did I don’t think it helps. I feel the gas, liquid, and/or food move through my intestines and it kills. The ostomy bag is kind of gross, nothing has really filled it yet because mostly have had only liquid.

Now it is 5:15am. I am so excited because I have some vistors tomorrow! A family member and a friend : )

Day of Surgery

okay so surgery sucks a lot.

day of the surgery. the 22nd, I haven't eaten solid for 3 days so I am ready for surgery so I can eat. got to the hospital at 6am. because i am legally an adult now and my parents couldn't follow me into the place where i had to wait for surgery. It broke my heart to leave them they looked so worried and upset for me.

While I was waiting for surgery, a bunch of people came up to me who were going to be in the surgery room. one guy was a third year medical student and chatted with me. lol he doesn't even want to do surgery he wants to do pathology, and he grew up near my high school's town. So he was nice to chat to. because I had two surgeons, nurses, two anesthesiologist, and a bunch of other people in the room needed, it took awhile to get started. All the doctors was there, but not the anesthesiologist, and I had the medical student like chatting to me while i was just like "PUT ME OUT!" haha

so i am finally "out" by 8:30am and only wake up at 4:15pm-ish. I wake up in so much pain! but it was all good i got to have lots of pain killers. I got something called a pce (I think) and that means I got this button to press which would give me a dose of morphine every 8 minutes. So I liked that. I stau in the recovery room until like 6:30pm and then I get my own private room (I get my own room because I have had c-diff, a bacterial infection three times before.)

That night was difficult. I was pressing that button like every 8 minutes, when I fell asleep I wasn’t pressing it. So I could only sleep in 3 hours intervals, where I would then wake up to pain and press that button for the following hour until I could sleep again. Nurses here are really nice. I also have to breath into this thing to prevent getting pneumonia.

I love food!

More things I want to eat (btw i am still not eating--lol thus i am fantasizing about eating)

my roommate's caramel fudge brownies
my aunt's fudge brownies
cookie dough!!
COFFEE!! (and coffee ice cream!)
pies! pecan pie, apple pie
jam---i miss having jam in the morning on my bread
Cakes!
crab cakes
fondue

:D

one day left

prep's suck. a lot.

Things I Will Be Able to Eat!

Things that I am excited to eat after the surgery:



Chicken Ceasar Salad wrap

filet mignon with benaise sauce

mushroom soup

chocolate covered strawberries

rasberries and blueberries in vanilla ice cream

a bacon cheese burger with lettuce and tomatoes

a croque-monsieur (couldn't eat ham b4)

onion soup

chocolates

nuts

FRIED food (french fries, chicken fingers)

a chocolate martini

PIZZA (with every topping)

wine

potato chips, sun chips (as well every other kind chips)

pears

apples

watermelon

asparagus

Parmesan chicken

pasta with tomato sauces!! (no more--"um i'm allergic to tomatoes")

scramble eggs with onions

quesadillas with other stuff in it besides just chicken and cheese

buffalo chicken wings

tacos

soda

lemonade

pretty much every vegatable, fruit, and EVERYTHING!!!

Getting ready for surgery

So today is two days before the surgery. I can only have clear liquids :( and no solid foods. I literally dreamed about eating food last night lol. I can't wait until after the surgery and be able to eat whatever I like. For those who don't know what the surgery is, it’s the removal the large intestines because that is where the ulcerative colitis is located. I am going to eat EVERYTHING after the surgery, I am so excited!!!

However, even though the scars won't be that bad, I am a little nervous for them. It will definitely be worth it and I am sure they won't be that bad because the surgery is done laparoscopically. I just took a picture so I can have a before and after picture of my belly haha.

Plus I have a bunch of DVDs all ready for me to watch for when I resting in my bed. This is going to be fun, nice and relaxing. I will get to catch up on all my t.v. shows and movies

Starting the Blog

So, my name is Kelly. And I have UC and I am going to get surgery which sucks. I am a college student and had to take the second semester off because it, which stinks even more. Therefore people suggested I write a blog about my experience and I am doing just that.

So I was diagnosed 2 years ago even though I started having symptoms 4 years ago. Maybe around my sophomore year of high school. idk its hard to keep track of when I started to feel ill. but when I got diagnosed it was the end of my senior year which was around prom time and graduation (and I unfortunately had to miss all my AP tests haha). It was all good though and I had a lot of fun.

Summer came and I got to rest. I really was looking forward to college even though I was still really ill, and was determined to keep going. It was tough at college. I couldn’t eat most food, couldn’t drink, was often in pain, and every 6 weeks I got this intense medicine, remicade, which would give me flu like symptoms. The admisitration of the medicine would also involve a whole day of traveling to an infusion place and recieveing the medicine, so I would have to miss classes. So after my first sophomore semester I couldn't deny it any longer and I have finally decided to take the next semester off during the winter break to get surgery.

So when I returned to college to get all my stuff, I decided to stay for the whole long weekend. It was Martin Luther King weekend. When I first got there, I was sort of really upset to have to leave, you know because I just thought I was going to be able to be back. I had already chosen my classes, talked about all the things I was going to do with my friends and roommate. So it was upsetting having to leave and return my key and such.

However I think that might have been my best weekend at Georgetown. My friends the following night held a surprise party for me which I was completely clueless about, even though there had been hints implying it. I had been completely oblivious to them. I was so moved by the fact all my friends had shown up to say bye to me. Most of them I had not even spoken to over the winter break, and I hadn’t even told some of my close friends because I was so upset about leaving. I still don’t know how my roommate and my friends planning it got all those people in the room!! I felt bad because I had left my room a mess not knowing about the party. I had bins, clothes and school books out.

That weekend I got the best part of everything. I got to go to dancing parties and parties were we just chilled. Plus that weekend was a lot of my friends' birthday so I got to celebrate it with them. I also just had fun relaxing in my room and haning out. I LOVE ALL MY FRIENDS AND I AM GOING TO MISS THIS SEMESTER SO MUCH!