GOODBYE 2014

Around New Years every year, I like to look back at my year and figure out what were the best and worst parts of my year. Not only just for fun, but so I can take my knowledge and change what I need to for the upcoming new year…

Looking back at my 2014, I have many different emotions that run through my head. This year wasn't like any year I've ever had before. 2014 was by far one of the hardest years of my life, but has given me many experiences that I will cherish and learn from for the rest of my life. In the beginning of 2014, I started by first semester at North Park University. I had to make the transfer of schools due to my medical problems, so from the beginning of my year, my life was based around my disease. Even though I was very hesitant about going to a new school, mid year, and not knowing a single person there… I now look back and realize that it was one of the best spontaneous decisions I have made. Not only was a closer to home and my doctors, but I also focused on school a lot more and ended up with very good grades both semesters. My first semester at NPU, I didn't like it or appreciate it as much as I do now. I didn't like going out or leaving my room because once again, I was very sick, always tired and liked to spend my weekends at home. I think I went home almost every weekend my first semester there. I was living in a dorm room (once again) by myself where I met one of my best friends, Sondra. Ever since we've met we instantly clicked and we are now roommates and will be for the next few years. She was such a blessing to have my first semester there because we were so much alike. 

Once summer hit, I was so happy to once again be working at my summer job, Independence Grove Forest Preserve. That was my 3rd year working there and I LOVE IT! It honestly is one of the best jobs around. I started working the day after I got home from school. I also began taking my summer Microbiology class because I wanted to get ahead so I didn't have to pile too many classes on top of each other for my fall semester. I was very stressed in the beginning of summer because I would work 40 hours a week and usually worked from 10am-6pm and then went straight to my night class that was Monday through Thursday from 6:30pm-9:30pm. It was right after the 4th of July, that I was starting to feel very sick once again. I was then admitted into the hospital for the 3rd time due to my UC. Not only was I upset because I was going into the hospital, but I was so concerned about missing work and school. July 23rd, 2014 was the day that changed my life forever. The day that I finally got my large intestine removed and the day that has given me many challenges I will have to battle for a lifetime. The day I decided to get my surgery was one of the toughest days for me emotionally because I knew things would be different for me from there out. I am so thankful that I found the strength within myself to go ahead with deciding to get the surgery because after two years, I have finally found my happiness again…

For when I am weak, then I am strong

My second semester at NPU has been such a blessing as well. I have continued to meet a great group of friends, and after struggling through a 18 credit hour semester, I was finally accepted into the nursing program where I will continue my dream on being able to help people who struggle with IBD. I know I have posted about this before, but it is something that I constantly think about on a day to day basis… what my disease has taken from me. There were so many times where I had to miss large events (country thunder, going on a ski trip to colorado…) because I was too sick to go. My UC had taken my dream school away from me, The University of Iowa. I loved going to that school and I wasn't ready to leave when I did. I was already on my Sophomore year there and I had been currently living in the Alpha Phi sorority house. Unfortunately, I also was very sick at the time and had to make a change, even though many people wouldn't be able to tell because I was very good at hiding my disease. Not only was I embarrassed to share with others, but I also was scared because I didn't even know much about it still at the time. My UC had at one point completely taken my happiness. I remember two summers ago, laying in the hospital bawling my eyes out not only from the pain, but because I was so depressed from basing every single thing I did off of my terrible disease. I couldn't go anywhere without feeling uncomfortable or scared that I would be stuck in a situation that would leave me without a restroom. I even began pushing people away from me because all I wanted to do was be alone, sitting in my room. Like I always say though, with all of the things that my UC has taken from me, it has also given me things that one cannot get without going through my experiences. It has given a different outlook on life… about how precious life really is and how often we take our health for granted. It has taught me not to stress out about the little things in life and not to worry so much. It has taught me compassion towards others and to never judge someone from the outside, because everyone is going through their own struggles, even if you cannot see it. 

Im so happy that 2015 in right around the corner. This year, I won't be having to make so many hospital visits, I won't be depressed because of my disease and I will be finally cured of my UC and DONE with all of my surgeries! After March 6, 2015 (the scheduled day for my third and final surgery!!!!!) everything will finally be back to normal and I will be able to one day look back at this bump in the road and be thankful that I made it through! ~~~

GOODBYE 2014….

CHEERS TO HEALTH AND HAPPINESS IN 2015!

-- JKL

Surgery #2

I was hoping that I would get the chance to update this blog sooner than I am now. My surgery was on Friday, December 19th and its now already Wednesday, December 24th, aka Christmas Eve. When the doctors kept telling me pre surgery that the second surgery will be the worst one, they were correct. Its been a rough recovery so far for me, at least compared to the last time.

On Friday, I was brought into the pre-op room to change into my gown, hear a bunch of information, and have an IV put into my hand. This was around 8am. I wasn't actually brought into the room until about 9ish. After this point, I honestly don't remember much. I remember being brought into a big room that was all white and very cold and from there they made me move from one bed to another. I don't even remember them telling me they were giving me the anesthesia or anything. From here, all I remember is nothing. I once again wasn't scared before getting the surgery, I was just not wanting to experience the feeling I felt the last time I woke up… the most pain I've ever been in.

To be honest, this time I don't really remember being in the recovery room after surgery either. Im sure I was crying and a mess, but I don't remember anything about it. For surgery #1, thats the ONLY thing I remembered because that was when I was experiencing the pain. The next thing I know is that I was wheeled up to my room and they made me move from one bed to another by sliding my body inch by inch. I remember this was very painful as well. The rest of Friday was a big blur. I remember being in tons of pain but I don't remember any conversations or remember anything significant that day. I still hadn't looked down at my stomach at this point, 1. because it hurt to badly to move and 2. because I didn't wanna see the incisions yet.

Saturday, was a lot like Friday. I was still on my PCA pump (morphine pumped out every 6 minutes) along with a catheter in still. Saturday I had a terribly mean male nurse that was making every situation worse. He was very insensitive about my pain and kept giving me a lot of attitude. He also had yelled at me because at this point, I hadn't moved up off of the bed yet. He went over to the bed and started to crank the top part of the bed so I was sitting upright. I started crying and yelling at him because that was not the way to get me to move, by forcing me to do it. Especially since at that point, I hadn't even moved yet. Eventually between him and my mother, they helped me sit up in the bed and then go on a little walk in the hall way.

Heres a picture of one of the flowers I got while in the hospital!

My pain after this surgery was a little different than the first time. This time, my entire stomach was very sore instead of a sharp stabbing feeling. However, I unfortunately had bronchitis about 2 months ago and have been trying to get rid of my cough since then. It wasn't completely gone during this surgery which really screwed me over. I was constantly having a productive cough and every time I would cough, it felt like my incisions were getting ripped open. This was the worst pain I have ever experienced now. At one point, I was crying and hyperventilating so badly from the pain, that I never even knew my cry could sound like that because you could just hear that I was miserable. I also had a fever on Saturday night so I was very hot/cold at the same time.

Sunday I was still kind of very loopy. They finally wanted me to start a liquid diet again (reminder, I hadn't even had a sip of water since Thursday night). I was so happy and ordered some jello, chicken broth and apple juice. Even though I was hungry, I still couldn't really eat that much. After lunch time, my family was coming to visit me. During this time, I became so extremely nauseous for so many hours that I literally laid there in silence with a bucket next to me. I couldn't talk because if I did, I knew I would throw up and it would cause so much pain on my stomach. After many hours, they finally gave me two different anti nausea medications and I eventually fell asleep.

Monday I woke up feeling pretty good. I had gotten up and went on a longer walk with my mom. The doctors also wanted me to try eating real food again, so I ordered a grilled cheese sandwich with tomato soup. I ate about half of it and it tasted good actually. Some of my friends were coming to visit me and I was so excited but right before they came, I got a terrible headache that left me sitting there unable to talk once again. Even though I didn't say much, Im so thankful I have great friends like them to come and give me company. The rest of Monday I spent sleeping at watching a little bit of TV.

Tuesday, I woke up and my mom had left the night before so it was just be. I was woken up at around 7:45 am and I was really hungry to I waited to order to breakfast at 8. This is the best I've felt this whole time. Then the doctors had come in telling me that I was going to be released that day because I was doing so great. Even though I was happy to hear that, it felt strange because I am so used to spending weeks at a time in the hospital.


Its now Wednesday and I am still having a lot of pain. Its Christmas Eve and Im sitting upstairs in my bed while my family is all downstairs together. I haven't eaten much either because I keep getting a very weird pain in my stomach. Im happy that my surgery is done, but sad that I am missing a holiday again due to my disease. Its taken so much from me, and this is just another thing to add to the list. I have been prescribed oxycodon which I've been trying to take when needed to help me be able to walk around a little bit. I haven't even gotten the strength to wrap any of my Christmas gifts I bought for anyone. I just can't wait until I feel better once again.

Heres all my bruises from my Heparin shot… ugh!

I hope everyone has a great Christmas Eve and Christmas and eat lots of food for me! Stay positive and always be thankful for your health. --

-- JKL

Ready or not...

Tomorrow is finally surgery #2.

Im getting up at 4am tomorrow morning (Friday the 19th) in order to be at the University of Chicago hospital by 6am. I have to go through a lot of preparation in order to begin my surgery at 7:30am. I most likely will be on time with the surgery since I am the first one going for the day. Today has kinda sucked… I've been on my clear liquid diet and I'm dying of a terrible headache right now. Not sure if its from not eating, or from not drinking my daily dose of Diet Coke and Coffee. Today I've eaten jello, chicken broth, gatorade and popsicles. I was never full at any point… I feel like a bottomless pit!

Anyways,
I am extremely tired and I need to go to bed soon but I just wanted to post my thoughts and feelings going into this. I have a completely different feeling than how I felt before the first surgery. For the first one I knew it was going to suck and I knew I was going to wake up with an ostomy and whatever else a surgery entails… but what I didn't know is that I would feel the most pain I've ever experienced in my life. I wasn't expecting to be in that much pain. Sitting here now, I know exactly how I am going to feel when I wake up from the surgery and it might even be worse this time due to the bigger incision. I wouldn't say I'm scared of this because that isn't the word I would use. I just honestly want to fast forward all of tomorrow because feeling that much pain makes you really question if this is all worth it. I have learned to never wish time away and enjoy the journey you are going through, but this is the one time I am actually wishing time away. I don't want to feel that much pain again to the point where I can't even function. I want it to all be gone and done with. I am very vulnerable right now and when someone wishes me luck, I become very shaky and tear up. I just want to feel better and I want this to be out of my life.


I will try to post an update as soon as I am able to function…
Until then..

xoxo -- JKL

Surgery #2?!

So last Wednesday, I finally had my pre-op appointment that I have been patiently waiting for since… well, my last surgery. Everything went very well and I learned a lot about what is going to happen. I am the first person getting surgery on Friday the 19th so I have to be at the hospital at 6am in order to be ready for surgery at 7:30 am. I was constantly being reminded that this is the hardest surgery I will go through out of the three.

So this is whats happening…
They are removing my rectum and rearranging my small intestine inside my body in order to create the "J-pouch" which is basically a fake rectum. In order to do this, an incision about 2-3 inches will be made about 6 inches down from my belly button. Since my last surgery never required a cut this large, Im sure it will be much more painful than the 1/2 inch cuts I had last time. Also, this surgery will take a bit longer to do because of all the rearranging of my intestine inside of me. My last surgery took about ~5 hours from when I went into the OR and by the time I woke up in the recovery room. I will still have my ostomy after this surgery, however, its going to be a little different. As of now, the end of my small intestine in the part that forms my stoma on the outside of my stomach. Since they will need to use that part as the end of my "fake rectum" they will be making a cut in the middle of my intestine where my new stoma will be made. There are a few differences in this, like it won't stick out as much from my skin like it does now, so it could potentially be a bit harder to take care of and maintain. I was told that I could be in the hospital for a maximum of 7 days depending on how fast I can recover. Im hoping that it will be similar to last time and hopefully I won't be in there for more than… 5 days? My goal is to be home by Christmas Eve.

Starting on Thursday of next week I will begin my clear liquid diet. This means that I am only allowed to eat/drink things like… clear soda, water, jello, chicken broth, popsicles… etc. Basically anything that if you hold it up to light, you can see through it. Im assuming that I will continue eating clear liquids after my surgery and eventually I have to go onto a low residue diet again for 6 weeks after my surgery.  I also am not allowed to lift anything more than 10 pounds for 6 weeks.

As next week approaches, I will become more and more anxious about getting my surgery. I keep getting asked if I am nervous or scared about it and honestly, Im not either of those. I am just extremely anxious that the day I've been waiting for since July is almost here. I am not looking forward to waking up in the recovery room and experiencing what will be the worst pain I have ever felt. Last time, all I could do is hyperventilate uncontrollably from the pain and I'm assuming this won't be any different.

I am very thankful for all of the support I've received from friends, family, acquaintances, and even past nurses. Its going to be a tough winter break for me, but with everyone helping me and sending positive vibes, I will be able to get through this just like last time.

-- JKL