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

College Life

As I posted last time, I was so excited to be asked to write an article for Companion IBD magazine about my UC story and what its like living with an ostomy in college. For many days, I thought about what I could include into my story and I finally sat down and put my thoughts together. I was sitting in one of the buildings on campus, drinking Starbucks (skinny vanilla latte of course!) and I couldn't help it, but I was quietly crying while typing it. Even though I am very strong and positive about my situation, there are many times where I think about my struggles I have been through and it hits me. It is always at the most random times too. I will usually be fine whenever someone asks me questions (even personal ones), but suddenly will find myself crying over the littlest thing.

The other day, I was actually very upset because I was asked to attend a Bears game with friends over winter break, and ONCE AGAIN I won't be able to go because of my disease (this is when I will be in the hospital after surgery #2.) This was the same day I decided to write my story. I kept thinking all day how my UC has taken so much from me. Its made me have to skip going on trips, miss going out with friends, made me transfer colleges and at one point had taken my happiness. I threw myself another pity party this day and I kept tearing up about it all. And then I remembered that even though it had taken so much from me, it has also given me so many things that I would have never been able to experience without having this chronic disease. It has changed me as a person, in a good way. Like I have said in many posts before, inspiring people is my number one goal from this experience because I am so thankful that I was able to find people who inspired me without even knowing it. I enjoy the little things in life, I find the silver lining, I want to help others. I have changed my mindset about how to look at things and I am so thankful that I was given the opportunity to feel this way. 

So here is what I wrote for the magazine. Im not even sure if it will be published or not, but I wanted to share a preview of it with everyone just in case….

My name is Jacqueline Lopez. I am a 20 year old, college junior at North Park University in Chicago, Illinois who is about to begin nursing school in the fall. I might sound and look like a typical college student, but what many don’t know from the outside is that I am currently living with a temporary ileostomy. I was diagnosed with Ulcerative Colitis about 2 years ago, when I was attending the University of Iowa as a freshman. Out of nowhere, I began having terrible IBD symptoms (diarrhea, severe blood, and weight loss) that went on for months and I had no idea what to do. I was embarrassed to talk to my close friends and roommate about it because it was something I had never heard of and it’s not an easy topic to discuss. After a few months of experiencing these symptoms, I finally got a colonoscopy, which is when it was confirmed that I had a life long autoimmune disease, Ulcerative Colitis. My doctors immediately started me on many different medications to hopefully relieve my symptoms and pain. Unfortunately, my body didn’t respond very well to any type of drug that I tried (Remicade, Imuran, Azathioprine…) and after losing about 25 pounds I was admitted to the hospital for the first time. At this time I spent about 30 miserable days in the hospital hoping and praying that some medicine would begin to work its magic on me. I finally was able to leave after taking large amounts of IV steroids and an immunosuppressant called Cyclosporine. Within the last year and a half, I still hadn’t been put into remission since I was diagnosed with my disease. This past July, I was admitted into the hospital for the third time due to my disease and didn’t have a choice but to get a total abdominal colectomy. I knew by getting this surgery that meant I had to face life as a college student with an ileostomy.

            If you would have asked me before the surgery how I felt about getting it, I would have said a lot of negative things about how people will make fun of me and how I didn’t want to tell anyone that I had this condition. All I could think about is how I would be able to tell people about this, especially while trying to live a normal college life. After waking up from my first surgery, I had a whole new mindset about how I was going to face this bump in the road and decided that I wanted to make my condition as public as I could. I explained to all of my friends and family about my disease and I still constantly post on social media to try to show people that this disease is more common than many people would expect. Even though living with an ostomy in college was one of my biggest fears, I am facing it head on and it isn’t that bad. Since I’ve started my junior year of college, everything has been going very well with balancing schoolwork and taking care of my ostomy. Unlike before, I can actually attend class without having to worry about running to the bathroom. My grades have been improving because I no longer feel sick anymore and I can actually focus on learning rather feeling sick and always wondering in the back of my mind if I would make it to the restroom. My disease has made me very passionate about going through nursing school in hopes to be an IBD nurse so I can help others who suffer and go through the same daily struggles as I do. The days that I don’t want to study for a test or go to class, I always end up thinking about how all of my hard work will pay off by being able to provide others with the compassion and care that the nursing staff gave me when I was a patient.  

             One of the biggest pieces of advice that I can give to someone who has an irritable bowel disease in college is to find a friend or a group of friends that you trust and tell them everything about your disease. By being able to confide in someone and share your experiences/concerns with them, it allows you to not have to go down this path alone. The first people I told about my ileostomy and surgery were my two roommates who were very understanding and willing to do anything to help me along the way. It differs greatly from person to person about whether or not they want to tell others about their disease or ostomy. I knew that by sharing my story with everyone, including college kids, I would have to face the few people who have negative things to say about it. For only having an ileostomy for 4 months, I have already experienced a few times where people have said horrible things about me and would purposely try to knock my self-esteem down. Whenever this would happen, I would always just look at the big picture and realize that everyone faces different challenges in their lifetime, and this one just happens to be mine. I remind myself that getting this surgery potentially saved my life and has made me an all around better person. Even if there are those people who say negative things, I learned that is was best to just brush them off and remind myself that my quality of life has improved tremendously and nothing that anybody says could make me regret this life long choice I have made.

            I am finally having a normal college experience compared to the horrible times I was going through my first two years of school. I am able to go out with friends, go to football games and do every day activities without a worry. I can pretty much eat and drink anything I want to (which is always a plus when my roommates and I order late night pizza!) Many people wonder about how dating works when you have a condition like this, and once again that differs from person to person. My goal during this time is to focus on myself so I haven’t experienced much in that topic, but if I were to date anyone, I would just say that honesty is the best thing. I look at it as being way better to tell them about an ostomy then having to hide running to the bathroom every few minutes. Now that the seasons are changing, clothing for the winter isn’t as much of a problem than when it was the summer. There are still times that I am unable to do certain things because of my disease, which is hard to accept at times. It makes me frustrated and always leaves me with the same question, “why me?” But like I’ve learned over and over again, there’s a silver lining to every situation, even if it takes a bit more effort to find it. My second surgery is coming up in December followed by my third in March. After that, I will be proud to say that I faced my biggest fear of being a 20-year-old girl who went through everyday college experiences with an ileostomy.

“A life not fought for would be so much easier, but so much less appreciated”

xoxo 
--- JKL

Life Update!

So school has been tough. I've been trying to get through all my major science courses and it's all going okay... But....

I got accepted into North Park's Nursing Program for fall 2015! I was really hoping to get in for the Spring, but hey this is better than nothing at all. I can't wait to finally start my clinicals and looking more into hopefully becoming an IBD nurse. All I want to do is interact and reach out to people who have these diseases and be able to connect with them. Even though it would've been great to start in the Spring, I think everything happens for a reason. I mean I DO have two more surgeries I am getting next semester and even though I would be able to manage, I'm sure it would be a lot to handle. This way I can start my nursing classes, UC free and ostomy free in the fall!!

Another thing I am very excited about is, I was asked to write my story about living with an ostomy in college for an online IBD magazine called Companion Magazine for IBD. They are coming out with a holiday issue and Brooke (the girl I talked about who is so inspirational to me) is the editor of it and when I told her I would love to help out in any way I could, she reply by asking to do a "spotlight story" about me. Like I said, my goal is to just share my story and inform people about the IBD community in any way I can!

Here's the link....

http://companionibd.com

The issue should be out hopefully around December and I will most likely be sharing that as soon as I see it.

Thanks again to everyone who has given me support and following my story. It means the world to me 

-- JKL

Strive to inspire

Today was one of those days....

I threw myself a pity party, yes. I have been really sick with bronchitis since I've gotten out of the hospital and it just has gotten so bad. I began to think after some time "why me?" I try not to ask myself that question, because there isn't a clear answer. I could ask that about my UC and about my surgery and about everything I've been through and ask "why me why me why me!?" UC is not something that I would ever want, but in a way I'm glad I got it. When I have days like today, where I get frustrated and cry about little things, it makes it so much easier to take a step back and realize what's important in life. My UC has made me love and enjoy the little things in life. The smallest things make my day everyday and it's all thanks to my UC. 

I also wanted to post about the two people who helped me through the surgery process without even knowing it. The first person I recently thanked was the amazing Nurse I had before my surgery. I just had recently sent her a thank you message on FB for believing in me and showing me that the colectomy surgery isn't a scary thing. I also finally just got the courage to reach out to a fellow IBDer who inspired me to get the surgery as well. When I was laying in the hospital crying about maybe getting the surgery, I decided to look up blogs about it and what people said. I came across a girl named Brooke's blog and it automatically reminded me of myself. The thing was.... She was so positive and inspirational about UC and IBD and her ostomy. This past weekend I sent Brooke an email, a girl I have never met, a thank you letter for being so inspirational. when I was writing it, I couldn't help it but tears were pouring down my face. I know when she opened that email up, she must have felt a feeling that I hope I will feel some day. 

I want to share my story and my life with people so one day, when someone is debating what to do about getting surgery, they will come across my blog and be inspired as well. That's why I was given UC, to inspire people and to reach out to my fellow IBDers.

I will be applying to the Camp Oasis next summer to be a volunteer staff member for kids who suffer from colitis and Crohn's. Nothing would make me happier than to share moments with people who have the same daily struggles as I do. 

I just want to make a difference. I want to inspire. And I will.

--JKL

Happy Ostomy

It's World Ostomy Awareness Day!!!  

I never thought in a million years I would ever post a picture of my ostomy. But it saved my life and I am so happy I got the surgery. 

School Update

So I just finished my second week of classes at NPU. So far, so good. Classes will start to be a struggle once they pick up though… AND I have my huge TEAS nursing test tomorrow that I am very nervous about. I need to pass it in order to apply for the program this fall.

This semester I am taking Chemistry, Physiology, Microbiology (the summer class i had to withdrawal from…), History, and Survey of Nursing.

Im living in my apartment in Albany Park and I LOVE IT! Everything has been so fun and awesome down here. I love being on my own and not living in a stupid dorm anymore! We've been going to Wrigleyville a few times and just having good ol' wine nights at "the brick."

I don't have many updates about my health… Im still off of all my mediations now and FINALLY MY FACE IS GETTING SMALLER! ahhh! :) Even a few people have told me that my cheeks look smaller and it makes me so happy! I'm still having a little bit of problems with breaking out due to the steroids I think, but Im sure it'll go away soon! I also don't have any other doctors visits until my next surgery… so around December..?

LIFE IS GOOD ~


-- JKL

"I am no longer a prisoner of my Ulcerative Colitis" - BB

It's true. I am finally living my life again, worry free. It has been a week and two days since my surgery and I don't remember the last time I felt this great. I am no longer in pain and having that constant worry in the back of my mind. I AM FINALLY FREE ~~~

I am feeling 95% back to normal. The only thing I've been struggling with is getting my energy back, but I am finally feeling pretty much like I normally would. The past few days I have been shopping and pampering myself. I got my hair done (which I needed very badly!) and I've bought myself a few new things to uplift my spirits. Last night I even dressed up for the first time in a very long time!

Deciding to get this surgery was one of the hardest things I had to do. I was so scared of what the outcome would be and I was scared living with an ileostomy. So far, it really hasn't been THAT big of a deal. I don't really mind showing people and you honestly can't even see it under my clothes unless I clearly point it out. It has been one of the best decisions I have made. I no longer have Ulcerative Colitis and I no longer am miserable. When I think about it, I just remember that there are so many people dealing with much bigger problems than living with a bag for a few months. Yes, it put my self esteem down at first, but like I've said before, everyone has their issues in life and this one is mine. I might as well embrace it and teach people about this disease rather than hiding it and being self conscious. Its part of my life and its who I am now.

Heres a picture from last night with my four best friends!…

Heres a few answers to common questions people have asked me:

Medicines?:
The only medicine I am on right now is Prednisone (the steroids) because I am slowly getting off of them. I have been on steroids for basically 2 years, so it will be so nice to finally be done taking those and my face can finally stop being so chubby! I am taking 10mg of Pred now, next week I will take 5mg, the following week 2.5 and then I will be done! YAY! After that, I will NO LONGER be taking any medication!

Diet?:
Right now I am on a "low residue" diet for about 4-6 weeks. This means that I cannot eat foods with a lot of fiber in it. Wheat breads, nuts, seeds, raw vegetables, and stuff with skins on it (apples, potatoes…) are all off limits for me. They don't want me eating anything that could potentially cause a blockage in my small intestine.

School?:
I WILL be attending school this fall. I start back at North Park University on August 25th. Since I had to unfortunately withdraw from my summer Microbiology class, I just added it to my schedule this semester. That brings me to taking 18 semester hours, which is the most I have ever taken. Now that I am no longer sick, I hope it will be a lot easier to attend classes and stay on track. I also will be living in my own apartment in Albany Park with two roommates. Its a 3 bedroom, 2 bathroom apartment and its super cute! I can't wait to move in and experience living in the city.

Next steps?:
I am planning on having my next two surgeries during winter break and spring break. Yes, it is going to suck that I will be spending my two breaks recovering, but I would rather get it done sooner than later so by next summer I will be done with everything,completely back to normal, and ileostomy free.



I know people have a lot of questions about my surgery and what changes I am dealing with, so feel free to ask whatever. I am an open book and would love to inform people about the IBD (inflammatory bowel disease) world.


-- JKL

One more day?

So this is my first post since my surgery. Wednesday night was rough for me. I don't remember much, except for waking up in the worst pain I've ever felt in my life. It had felt like I had been stabbed numerous times in the stomach and at the time felt like I had no medicine in my body. I remember them waking me up while on the way to recovery and I was crying and hyperventilating so badly, except everytime I would cry it would hurt worse and worse. I remember my mom and dad coming into the recovery room and just looking at them seeing how worried they were because I think I looked very bad and in pain at the time. My parents said we were waiting there for a few hours but I honestly felt like it was only about 30 mins until I was transported back to my room. They had to have multiple people lift me from one bed to another because i physically couldn't move. I remember having my own pain pump, but couldn't tell you how often I pressed it. I don't remember much that night either, it's all quite a blur.

When I woke up the next morning I was still in a lot of pain. I also realized I was connected to a cathedar still so I kept getting the feeling that I had to pee but it would go away. I actually don't remember much the next day after surgery now that I think about it either. I know I slept a lot and they eventually took the cathedar out which scared me because that meant I would have to get up myself to use the bathroom. After some time, a physical therapist came in to help me get up for the first time. I actually couldn't move without someone's help. My stomach was so sore and my legs were so weak. Once I sat up, it took me some time to waddle from my bed to the bathroom to finally go pee on the toliet. Going pee the few times I did that day might've been the only times I got up that day. I was also still on a clear liquid diet, but I wasn't hungry at this point anyways so it didn't matter much.

Friday rolled around and I was already feeling quite better. I was still on my morphine pump (which helped a lot) and I think this morning I was allowed to drink my clear liquids to make sure everything went through my system as planned. And it did. I think they also switched me to a low residue solid diet for dinner where I ate a grilled cheese and some mashed potatoes. However for some reason my heart rate when crazy while I was eating so we told the nurse and they came in to do an EKG test on me, just in case. Everything was normal, my body was probably just freaking out cause I was actually eating normal food for the first time in about 5 days. 

For the past few days I've felt about the same. My pain is tolerable. I've only been taking Tylenol for pain and that's it. I've also been eating regularly and trying to walk around as much as I can. Tomorrow  after the stoma nurse comes once more, I will be going home (hopefully!) I think just being at home will make me feel better instead of sitting in this same room day after day. I haven't showered since Tuesday... Ew I know I think I have dreads. Also because I am coming off the prednisone again my acne has been acting up... Oh joy! Just one more thing to bring my confidence down. 

My stomach has just been kinda sore and it's gonna take some time to build my energy back up. I'm hoping this week will be relaxing and pain free for me. I have a lot of adjustments to get use to but I'm ready for it. 

Once I have more time at home I can update again, right now I am just typing from my phone and my fingers are going numb!

-- JKL

The night before

So tomorrow is the day. The day my disease will be gone and I will be on the road to recovery! I will be getting surgery at 2pm tomorrow. Today I've had many different nurses and doctors come in to talk to me about the procedure and asking me questions to finalize everything. An ostomy nurse came in today as well and marked my on my stomach where my stoma will be placed and also gave me instructions and examples of the ostomy bags I will be using. However, the word pouch or bag freaks me out so I will now be referring to it as Maggie... Maggie the Baggie! It just kinda sounds a little better in my own head! So whenever I talk about Maggie, you'll know, yup, that's the ostomy bag that's gonna be my BFF for the next few months. 

It makes me sad when I think about it but I just need to remind myself, this is temporary. And not to mention, a great learning experience to help me be an even better nurse in the future. Who knows maybe I'll even be a GI nurse or an ostomy nurse!

Well tomorrow I won't be eat anything which I think I'm the most upset about. I've already been on a "clear liquid diet" for 24 hours and my stomach is going crazy. I won't be able to eat real food for a few days, so I will definitely be "hangry" (hungry + angry).

Mmmmm chicken broth and jello....

I was told I will most likely be in a lot of pain tomorrow. I will have my own personal button giving me pain meds every 8 mins or so? After the first day, they said they will want me moving around as much as possible, so moving to the chair and maybe walking around a bit. I'm hoping for a fast recovery. I've been here 2 weeks already and I'm so over this. I just wanna go home and be pain free! Tomorrow will be the beginning of a whole new chapter of my life. 

-- JKL

Surgery?!

I just got approved to get my surgery on Wednesday. I started an all liquid diet tonight... (Chicken broth, orange jello, lemon ice, and flavored water).

I've been very up and down emotionally. I am prepared for it, but it hits a little harder once you find out it's actually gonna happen. 

Tomorrow I will meet with the head sergeon, Dr. Hurst, to get final details about everything. I will have a big update tomorrow I'm sure, until then, I just need to get some sleep and rest my thoughts. 

-- JKL

There is still hope!

SO…
I made my decision yesterday that I am going to give the Cyclosporine one last shot. I have been waiting for months and months for this new infusion drug to come out and I feel like I've barely given it a chance. I don't want to give up yet; there is still hope! I know I might be dragging out making myself feel like crap and maybe just postponing surgery for a later time, but I feel like this was the best choice that would leave me in a good state of mind.

They started giving me the Cyclosporine last night around 8pm and its on a constant IV drip right now. They want to see major improvement on this within about 3 days. If there isn't improvement, surgery would be the next step. However, if I am doing a lot better within the next few days, I will be going home and just taking the Cyclosporine orally.

Even though I HATE this medicine, I just am gonna suck it up and deal with the side effects again. It makes me look extremely swollen in the face, turns my hair/eyebrows a very dark brown color, and even makes my arm hair grow?! Not to mention, I still get tremors and sometimes tingly toes and fingers.

Hopefully within a few days, I will be updating my blog in the comfort of my own home. Sitting in one room for this long is quite depressing. I just wanna go home! :(


-- JKL

Decisions, Decisions…

So today I met with Dr. Rubin and I was left with a decision to make. A very HARD decision might I add… He told me that as of now, I have two options to choose from.

#1.
I have the choice to get my colon removed through surgery. This would be a three step surgery and would take many months to complete. If I chose this, my first surgery would be given probably by the end of the week or early next week. I would then be in the hospital for maybe 5-7 days after the surgery in recovery. He said that people who have gotten this surgery notice a difference right away and start to feel relief instantly. I would also be living with an ileostomy bag for 6 months until surgery #2 and then for a few months after the second surgery. By surgery #3, thats when they would be able to connect my intestines all back up and I would be "back to normal." Heres a diagram to kinda show where the ileostomy would be and what would be taken out...

#2.

He also is giving me the option to take the medicine I've mentioned previously called Cyclosproine. This is the "miracle" medicine that helped me get out of the hospital last year and away from surgery. This would be used as a bridge to see if the new infusion (Vedolizumab/Entyvio) would kick in. The studies have shown that this infusion can take from 6-10 weeks in some patients before they start responding. The Cyclosproine would help be bridge for the next few weeks since I am only just past week 2 and I would be slowly taken off of it to see if the infusion will work. However, since the Vedolizumab is such a new medicine, this has NEVER BEEN DONE BEFORE. There hasn't been anyone who has used cyclo as a bridge for the vedo. He says that he doesn't think that taking the Cyclosprine along with the infusion should be any more dangerous than what I did last year. 

So now I am stuck here with this decision to make…

Do I get the surgery so I can start to get the relief I have been desperately seeking for almost two years now… or do I just try this LAST option with no guarantee that it will even work, but if it does, I will still be living with a colon?! Part of me just wants to get it over with and get the surgery because I sounds so nice to just not have to worry about this, for once. But again, I have been trying and trying different things for almost 2 years, so might as well try all of my options before just giving up and getting surgery which is permanent. 

The doctors will be in tomorrow wanting to know my decision, so I have A LOT to think about tonight. I know whichever route I choose, it isn't an easy choice, but I'm still hopeful that maybe, just maybe something will go right for me for once.

Until then, I just need some positive vibes sent my way ~~~ 

-- JKL

Hospital Update #2

First of all, I just wanted to thank everyone who has been so supportive throughout all of my struggles. I have amazing family and friends. Even many people have reached out to me that I barely know and have told me stories about someone they know with this disease or even to just say "I hope you feel better." 

So today's been kinda an emotional roller coaster for me. Dr. Rubin was in here early this morning and after I told him about how I was feeling, he was very concerned. I shouldn't be feeling this bad still with all of the steroids and medications I've been on and it's very unhealthy for my body. After explaining things to me as best he could, he told me that at this point my best option is to get surgery to get my colon removed. This is something I knew I would have to get done eventually, I was just hoping I would be able to drag it out as much as I could instead of getting it at 20 years old. It was hard to hear, but I've been preparing for it for quite some time and I knew it would be an option coming back to the hospital. 

Tomorrow morning around 7:30am I will be getting another scope to make sure once more that there isn't any infections that are causing me to feel worse than I normally would. They will also take biopsys and just look at the colon to see how inflamed and damaged it really is. 

After this procedure, they will determine what steps should be taken next... Surgery being very high on the list. The team of surgeons will be coming in tomorrow to discuss the procedure with me and talk to me about how this will change my life. From what I know now, this is a three step surgery and I will be getting an ileostomy bag for a few months. I'm planning on posting diagrams and pictures about what they will be doing once I find out all of the correct information tomorrow or Wesnesday. 

Even though this is the last thing I had planned, I hope that this can finally give me the relief I've been desperately seeking for almost 2 years. 

-- JKL

Hospital Update

Today is my third full day in the hospital and I'm actually feeling quite antsy. I am feeling better than I was on Wednesday night, definitely, but still not 100%. Will I ever feel 100% at this point? I got my second Entyvio infusion yesterday morning and for the past few days I have been getting IV steroids. Dr. Kinnucan talked to me yesterday and explained how even though I might not feel as sick as I have before when I've been in the hospital, I still am pretty sick. She doesn't want to send me home right away and have things backfire which could include getting my colon removed. I trust what she's doing, I'm just going crazy being in the hospital. Third times a charm though… right?

Im assuming I will probably be here until Monday because Dr. Rubin will be in then and he might want to come by and see how everything is going.

My third infusion will be given in four weeks from yesterday so besides giving me steroids, there isn't much more they can do. Dr. Kinnucan is trying to make me feel okay for another four weeks in hope that by then, the medicine will start to kick in and I will be able to feel the difference. But like she said, if things go backwards from here until then, it could result in a terrible, terrible surgery!

My parents have been out of town camping in Door County all weekend, so I am staying at the hospital by myself :(. Fortunately, my sister stayed with me the first two nights and one of my best friends, Gabby, stayed last night. Also, Sondra, my roomie in the fall came by today and surprised me with my favorite Starbucks drink (a nonfat iced green tea latte of course!) and a delish breakfast sandwich.

Its been a tough ride, you guys, but I'm still hanging in there. Once again, I am so blessed with everything in my life, but never would I ever wish this disease upon anyone. Its very draining emotionally, physically and mentally. I know everyone has their struggles in life and I've accepted that this is mine. It's only going to better my outlook on life, and hopefully one day make me a better nurse.



One of my friends sent me this ecard the other day and I thought it was best to share it!… 

I've also wanted to post this lovely video that made me DIE LAUGHING from Tosh.0 of course. He never fails to push things to the extreme!…. I couldn't find the short version, so start at 7:11 and watch the whole thing until about 16:10!!!

-- JKL

Nooooooo

Soo this is going to be a very short post, BUT surrpriiisseeeeee.... I'm heading back to the University of Chicago Hospital again in the morning to be admitted for a couple days. I've been very emotional the past few days from this constant struggle but I'm trying! Just thinking about how I'm going to be missing work tomorrow and this weekend and my class including my test I have tomorrow! Ahhh!!!

I was told I am going to be put on IV steroids and given my next dose of Entyvio infusion early to see if it helps with anything. Fingers double crossed. This whole UC thing is getting really old... I need some relief, I need to be me again! Comeonnnnnnn!

I will be posting I'm sure a lot this weekend since I'll be stuck in my hospital room by myself with my computer. Until then, chao

-- JKL

Update since 1st infusion

So tomorrow will be a week since the first infusion. I haven't noticed anything different yet, unfortunely, but they said it could take up to the three infusions so I'm staying hopeful. Actually, things are going slightly downhill for me. I think since I have stopped taking the Tacrolimus and this new drug hasn't kicked in yet, my body isn't too happy. I've still only been taking 15mg of prednisone but I now am getting boosted up to 40mg again... Ugh when will it end?!? Hopefully this boost in the roids can give me a little relief, I don't have time to feel like shit!

I've been very busy this summer with working full time and going to a night summer class four days a week. Adding my complications from my disease on top of all this is such a pain. I am so close though! I need to look forward and stay hopeful!!!!!

I am scheduled to get my next infusion on July 15th. Crossing my fingers that I will notice some changes after that one... Please please please. 

-- JKL

FINALLY!

So tomorrow is going to be June 27th, 2014, the day I will FINALLY be receiving my first dose of the new medication!!!! I am going to the Metro Infusion Center in Libertyville at 2 pm to get my first Entyvio infusion. I have been in contact with my primary doctor, Dr. Kinnucan, and I have stopped taking the Tacrolimus since Wednesday, but I will continue to take the Predisone 15mg for now. I was told that the medicine can take up to the third infusion (6 weeks) to start to notice any major differences. Some people can tell after the first or second too, but it just varies from person to person. 

The plan for now is that I am going tomorrow to get the first infusion, I will go again in 2 weeks and then another 4 weeks after that. After my first three infusions, I will then receive it every 2 months. AND I hopefully won't have to take any oral medication anymore..!

I will keep updating throughout this process and discussing how I am feeling or if I can notice anything.

-- JKL

Update

The new infusion drug was finally approved by the FDA on May 20th!! After a long 4 months of waiting, hopefully it will all pay off. There are a few things that still need to be done in order for me to get the medicine. Right now my doctors have sent a letter to my insurance and then the infusion center needs to verify all of the insurance benefits. Starting June 1st is when the University of Chicago Hospital will likely have the drug on site to begin giving it to patients. Also within this next week the infusion center staff needs to be trained on how to use the drug before they can give it out. We're looking at mid June now on when I will be able to have an appointment to get the infusion. I feel like everytime I talk to the doctors they just keep telling me a later and later date. So I'm hoping this mid June date won't get pushed back any later. It would be the best birthday present to me if I could be feeling back to normal again. I've struggled everyday for the past year and a half and I'm crossing my fingers that this will be the miracle I've been waiting for!

I will post an update once I hear back from my doctor! 

 -- JKL

and IM DONE!

Its official! I am done with my sophomore year in college! Wow did this semester fly by. I am just so thankful that I was able to finish off the year getting all A's in my classes and not having to withdrawal or anything like I did last year!

Today I went on 30mg of Prednisone and I am feeling the same as always. Ill be on this until Wednesday when I have my appointment at 8am in Chicago.


YAY SUMMER 2014!!


--JKL

Last week of school!

I am getting so excited. This week is my last week (filled with tons of studying for finals) at North Park University. I am hoping to get a 4.0 this semester, giving me a better chance to get into the nursing program in the fall for next spring. My health is kinda back where it has been in the past. I would say I feel good 75% of the day. Mornings are always not to great for me still, but I would take feeling this way anyway over how I felt during Easter weekend. I am slowly decreasing my Prednisone again. I just recently went from taking 40mg to 35 mg and I will be on that for 7 days. After the 7 days I will go down to 30mg and I'm heading to the University of Chicago Hospital on the 14th for a clinic check up. Dr. Kinnucan said we will figure out what to do from there. I hope I will get some answers about the new medicine I've been talking about, because I have been waiting FOREVER! 

Sooooo just about a week and a half left until I hopefully will know what I will be doing with my future and how to control my colitis. That will go by fast considering I've been waiting months and months. This whole process has been one big waiting game.


I just remember… 
I am 2 blessed 2 stress!

-- JKL

This week so far...

Even though tomorrow is already Friday, it feels so early in the week for me because I didn't make it back to school until Wednesday morning. I was feeling very miserable all the beginning of this week because the steroids hadn't started to work on me yet. I am a little angry and sad that I had to start taking the Prednisone (40mg) again because I thought for once I might get to take a break from it. Now, I am currently taking 40mg of Prednisone, 3mg twice a day of Tacrolimus, Probiotics, and regular vitamins. I should also start taking Bactrum once a day now that I am back on the high dose of steroids.

So I finally got the name of the medicine I am waiting on and googled some information…

Vedolizumab: 

is a humanized monoclonal antibody that inhibits adhesion and migration of leukocytes into the gastrointestinal tract by preventing the alpha4beta7 integrin subunit from binding to mucosal addressin cell adhesion molecule-1 (MAdCAM-1). It was developed as a treatment for patients with moderate to severe ulcerative colitis (UC) or Crohn's disease (CD) who have failed at least one conventional therapy, including tumor necrosis factor (TNF) antagonists.

As of now, it still says that it will be available late May for patients with UC, like myself.

I only have 2 more weeks of school left!! and I'm hoping I can actually complete this year without having to withdrawal from any classes (like I had to do last year… ugh) That will keep me on track for my class in the summer and classes in the fall so I can apply for the nursing program in the fall as well!

I realized this last summer as I was miserable from this condition, but it really makes you stop and realize how many great things you have in your life that you take for granted. You never really think about people who suffer from diseases or illnesses everyday and how it can affect so much. Even though my disease can get rough at times, I still feel for those people who battle something much worse everyday. Health is something that is so easily forgotten about to appreciate until something major happens. Even after being in the hospital before, I still forget from time to time to stop and think about how lucky I am to be this healthy. 

-- JKL

My weekend

I've been home since Wednesday and I was expecting to have a long productive weekend. Well that all took a turn for the worst. Since Friday I've been in a lot of pain and so so so tired. My symptoms have been so bad and I almost feel as bad as I did when I was in the hospital. Today I was suppose to go back to school but I feel way too sick to go. Instead we went and got my blood drawn so the doctors can check the levels on everything and see if there are any red flags. Tomorrow I will either be heading back to school or to the hospital again to be admitted. Ugh, not to mention I'm on 40mg of the steroids again... My cheeks are gonna start getting super large again :( 

Well back to bed I go... 

Pictures from a year ago --

Here's a picture I found that was taken a year ago in the Lake Forest Hospital. My mom had gotten me that bear to keep me company! 

Here's a few more pictures I found as well from my stay at the hospital and all of the support I had! 

These past few mornings for me have been kinda tough. I've had no energy at all and I've been sleeping until about 12 or 1pm because I physically can't get up. Also, my stomach is always worse in the morning and I've gotten to the point again where I am nauseous in the mornings so I can't eat much! I hope my prednisone kicks in soon so I can start feeling a little better. 

--JKL

How it all started --

Last January, I was attending the University of Iowa as a Freshman. Winter break had just ended and it was the first weekend back so a bunch of girls were very excited to go out to the bars on Friday night. For some reason my stomach had felt really upset, but I thought nothing of it and continued to drink and party my night away. Waking up the next morning I was constantly running back and forth to the bathroom because I was still having a very upset stomach from the night before. I quickly jumped to conclusion and thought that I had just eaten something (probably some of the nasty dorm food) and had gotten a mild case of food poisoning.  A few days had passed and I was still having the same problem of running to the bathroom because of an upset stomach. I was getting a little concerned because I didn’t think food poisoning lasted that long. I decided to tell my boyfriend at the time about what was going on and he told me it probably wasn’t anything to worry about and I agreed. A few weeks had passed by and my symptoms were starting to get worse and worse. I was beginning to have very runny stool, and after some time I started noticing blood in it. This freaked me out a lot because I always heard that if you see blood, something must be wrong. I finally told my mom about the situation because I figured I would probably have to see a doctor. I was very embarrassed to talk about my “bathroom issues” because it’s not something I would ever normally do.  I had set up an appointment with the doctor at the University of Iowa Hospital and i was very nervous on what they would do and what they would tell me. I went in and told them all of the problems I was having, but they couldn’t diagnose me with something right away. I had to go through many different blood tests and stool tests. Meanwhile, I was still very embarrassed to share any of this information with my friends at school. I really should have though because going to the doctor many times alone made me upset from time to time. After many trips to the hospital, I still didn’t have an answer on what was wrong with me. 

Spring Break was coming up and they told me to try and schedule a colonoscopy with a doctor close to home. When I heard this, I automatically freaked out because I didn’t want people i didn’t know shoving stuff up my butt! After hearing my mom say how this is the best thing for me, I finally agreed to the procedure. The night before my colonoscopy I was required to drink the detox drink that basically “flushes your system out.” I was supposed to drink one 12oz cup of the liquid at around 8 pm and then wake up at around 3 am and drink another 12oz. Even though it tasted HORRIBLE, I finished the first cup in no time and was noticing the effect of it right away. After a few hours of running back and forth to the toilet, I finally laid down to get some rest before the “big day.” I woke up at 3 am again to try to down this next cup so I could get it over with, but tasting that drink again upset my stomach so much worse than it did before and I ended up throwing up half of the drink. I didn’t care at the moment because all I was concerned about was going back to bed.  The next morning came way too quickly and I was up at the crack of dawn to go to my appointment. Dr. Tasiou at the Grayslake office was going to be the doctor doing the procedure and he had told me he had done many of them before so I had nothing to worry about. My boyfriend came with me because I was mostly nervous about getting put under because I never had before. I remember them bringing me into the room to get anesthesia and the doctor told me to count to 5 out loud and I only remember counting to 4. The next thing I know is I am awake and not knowing whats going on. The doctor had informed me that they had already done the colonoscopy and I was going to be kept in a room until the anesthesia wore off. My parents and boyfriend joined in the room with me and laughed at my voice and the things I was saying (I honestly don’t really remember!) A few moments later Dr. Tasiou came in with pictures of the inside of my colon and explained that they were pretty sure I have something called Ulcerative Colitis. I had no idea what that even meant. He explained how my large intestine is “sick” and usually people who have this Irritable Bowel Disease get it around my age. Even though you can’t “cure” the disease, he told me that they have plenty of medication that people take and it helps make them have a normal life again.  

Feeling good about it, I went back to school at the end of break trying a few different medicines (I don’t remember which ones now since I’ve been on so many.) I thought that the medicine might take a little bit to start working, but I never really noticed any type of improvement. Actually, I was getting worse week by week. The urgency was getting to be the worst of everything. I couldn’t go anywhere without being worried about where the bathroom was and if I would be able to make it in time. I also noticed that I was losing more and more weight each week (which i was kinda happy about being a 18 year old girl) but I knew it wasn’t healthy. Things got to be so bad, I refused to go to many of my classes because I knew that I would end up having an “accident” because I physically could not control my bowels anymore. I would cry to my parents on the phone about how uncomfortable I was everyday. Finally, my mom spoke with a doctor and told me I needed to be admitted into the hospital at home ASAP. My mom made my buy a bus ticket on a Wednesday afternoon back to Grayslake, Illinois and I was in the hospital by Thursday morning (EXACTLY 1 YEAR AGO FROM TODAY!) I ended up staying at the Lake Forest Hospital for about 5 days and they had tried other medications on me, including Remicade, in hope that my body would respond to it. They didn’t think I was ready to leave the hospital just yet. Dr. Tasiou requested that I go to the University of Chicago Hospital where I could see an expert, Dr. Rubin. I ended up going there for a few days where they monitored me very closely and took blood tests everyday. I wasn’t feeling any better. Around the 8th day, my favorite doctor, Dr. Jami Kinnucan told me that my inflammation levels were going down significantly from being on the steroids (Prednisone) and that I could be released and go back to school to finish the semester. I remember going home and getting ready to leave back for school crying because I knew I wasn’t feeling any better even though the doctors told me I was getting better. I was so scared that during the 4 hours back to Iowa City, I would end up having an accident because we wouldn’t be able to get to a bathroom fast enough.  I was okay once I got back to school and I knew I only had about a month left and then I wouldn’t have to worry about school work on top of my freshly diagnosed disease. 

The next few weeks were some of the worst weeks at school. I didn’t want to eat anything because it would go straight through me, I was in a lot of pain, and on top of everything I was very embarrassed to be living in a dorm and having to share the same bathroom with about 25 other girls. Multiple times a night I would have to RUN to the bathroom in order to make it just in time. The mornings and nights were always a lot worse than during the middle of the day. I say its because my colon is “sleeping” while I am so when I wake up, it does too and wants to get rid of everything right away. Finally finals week was here and I was MISERABLE and so stressed out about my classes. I couldn’t even get myself to study very much because I was so uncomfortable and just very sick that I was sleeping a lot. I ended up taking one of my finals on that Tuesday and I got an A on it (thank god!) but I still had 3 more tests on that Wednesday and I knew I wasn’t ready. Once again, I was MISERABLE. I called my parents bawling my eyes out because I physically wouldn’t be able to sit through my test without having to use the restroom. My dad decided that he should come and get me and I would have to miss my tests because I needed to go back to the hospital. He got there within about 6 hours of me calling and we packed up my dorm room as fast as we could. Thankfully I had an amazing roommate, Alexa, who did a lot for me. 

The days in the hospital were very rough. I spent almost about 30 days in the hospital all together because of my colitis. At times I thought things would never be better, I had never been in so much pain and haven't been more depressed in my life. My first few weeks I refused to eat anything because I was constantly nauseous. The nurses were getting worried about my weight because I had already dropped 20 pounds and I looked very thin for my height. After many different medications, they didn’t think anything else would work. They told me I would have to get surgery to get my large intestine taken out, and I even had surgeons come in to talk to me about the procedure. I was so upset, being an 18 year old girl and thinking about having to live with an ileostomy bag attached to my stomach. Thankfully, they told me there was one last medicine I could try but it is very harmful to your body. It was called Cyclosporin. After a few days of that, HALLELUJAH! I was feeling 1000x better than I had been. I even ate a WHOLE pizza to myself one night because I was feeling that great! I was only in the hospital on the Cyclosporin for about 5 days and I heard rumors about me being able to leave to go home. At the time, I wanted nothing more… being in the hospital for that many days in a row was depressing! Especially when all my friends were on summer break and having fun, while I was spending my days in a white room in bed all day. The day finally came and I was released! I had never been more excited in my life to be able to step outside and breathe in fresh air.

Through out this year and a half I have been on so many different medicines, I cant even remember all of the names. Since sometime mid semester, I have been on one called Tacrolimus and the usual steroid (the one that makes me cheeks extra big!) called Prednisone. I have been getting so excited because I have slowly been decreasing my dosage on the steroids in hope that I will finally be off of them. I have been on them since about September and I am so sick of it! Not only does it make my cheeks large but it also makes me shakey and I just know how bad it is for my body to be on them for that long. As I have been decreasing, I hadn’t noticed anything going wrong so I was starting to get very hopeful that maybe my body would finally respond to a medicine for once. About 2 weeks ago, I had officially stopped taking the steroids and I couldn’t have been happier. However, since I've been off of the medicine, I automatically noticed things starting to go downhill. My symptoms were becoming a lot more noticeable and I was starting to feel miserable again. Even though I was dreading it, I did tell my doctor about it and she told me how I should go back on a lower dose of them. So here I am again, back on the steroids! 

Only about a month left until I can try the new infusion drug coming out! I’ve made it this far, so a month will feel like nothing! Just trying to think good thoughts!

-- JKL