Year follow up

So I know I was really bad at writing a blog. I went back and read some of my entries, and either I was really out of it or I am a horrendous writer (or a little bit of both). The second surgery went well and I recovered. I left the hospital 2 days after the surgery, however that was too soon because I tried eating some soft food and ended up throwing up in the car on the way home. The next day I had to go back to the hospital for IV and I had stopped eating again. Yet two day later I could go home to rest.

At first it burns!! I have not used part of my intestines for about 8 weeks, and it is not used to absorbing nutrients. I went to the bathroom like 20-30 times a day I think. However I got some prescription medicine to help with it. haha also your butt-hole hurts like hell! if you are getting this surgery--get some prescription cream from your doctor because the stomach acid will deteriorate the skin.

Also the reversal of the Stoma they do not close up....so there was a giant hole in my belly where the intestines used to stick out. it took a couple of months to close up. They do this because apparently there is less chance of infection when only the deep tissue is sew compared to when the whole thing is sew up. It heals from the inside out. I might put up some photos, so people can get an idea of what it looked like.

Now, a year later, I am a completely healthy college student (well as healthy as college students can be). I can eat whatever I want!!!! so that whole lists of food listed earlier I can eat now!! I am shocked I have not gained 100 pounds. I am still skinny, but not disgustingly thin anymore. I can work out without having spasm. I sill go to the bathroom 6-8 times a day. However I can control it and it is not painful. If I drink lots of alcohol or have too much caffeine my stomach will growl at me. My intestines is still getting used to digesting food. it takes about 2 years post-second surgery to completely get used to digesting food.

After the second surgery, for about 6 months and even still occasionally, my stomach makes really loud growling sounds. People in my classes sometimes look at me and ask if I am hungry. Which of course i just respond to "No my large intestines is just missing and my small intestines is trying to replace its functions so its growls at me when I digest food." Haha no, I usually just remark, "yeh, that much be it."

The spasm/growls are not that painful just really uncomfortable. I can feel the food moving through me. It's hard to explain. I could literally feel when the food would move to one part of the intestines to the other---weird! My doctor gave me some pills (hydro-sl) to take when the spasms happen. The pills help.

In addition to feeling healthy, I no longer have to take any medication. Occasionally I take iron because I am anemic--but so are a lot of girls my age.

This surgery was the best choice for me. I got my life back! I just hope that everything continues to stay good and I don't have any complications in the future. For people with UC and are constantly in a flare-ups and in pain I highly suggest the surgery despite all the pain and complications it can come with.

Old Post

hey, so I found this on my computer. It was from my second surgery. The reversal of the stoma (the part of my intestines that was on the outside of me)

"So I have been bad and have not been updating my blog at all. Sorry. Anyway got my second surgery done yesterday. It was st. patrick’s day—for good luck. There was lots of traffic in the city so it took a long time to get into nyc. I had to stop eating Monday morning. On Tuesday they had me scheduled to do all my pre-testing at mount siani. I needed to get a bunch of x-rays done to make sure the first surgery was 100% successful. Also they needed to draw a lot blood for tests to make sure I was healthy for surgery. After hours of waiting and tests, I then had an appointment with my surgeon---this whole day I had to go through while drinking a nasty prep to make sure my intestines were clean for surgery day.

I was dizzy and feeling like crap the whole time and there was a lot of waiting and I didn’t want to read because it made me dizzy. So first appointment got there at 8:30am was only seen at 9:30. Surgeon’s office got there at 10:30 was only seen at 12:15pm. The only thing he said to me was "oh the surgery is not at 9am anymore tomorrow its at 2pm—actually 3pm----hmmm….do you want to do the surgery Monday actually." I was so mad at them switching stuff up. I was on my second days fasting, did all the pre-tests, and was starting the medicine prep that day. So i was like yeh I would mind. Haha

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