I've never written a blog before; but I have kept a journal. I was introduced to the "blogging world" through my aunt who wrote a blog about me in the end of July. I thought it was cool but had no interest in doing it myself. I have had it pretty rough the past couple months and have had a lot of decisions thrown in my path where I had to choose what I thought was right for me. These times of trial got me really down in the dumps and I haven't been able to really get back. I thought about journaling again but I hate it because I begin to write and I feel like I could write forever . . . until my hand feels like its going to fall off that is. So I figured, seeing as though I am on the computer ALL THE TIME why not give blogging a shot?!
So here goes . . .
I was diagnosed with Ulcerative Colitis when I was 13 years old. If you don't know what it is, I hate to sound rude; but, look it up. I went through times of flare-ups and remission and now at the age of 20 have had a total of 8 colonoscopys and 2 endoscopys. Nothing to write home about. I moved away to school 2 years ago, August of 2006 and did okay but without a doubt I was sick by 2nd semester. It was luckily controllable and I went through the summer and returned to school in the Fall for my Sophomore year. 1st semester was all right but I began getting sick sometime before Halloween. I finished out the semester and ended up being hospitalized for 2 nights over Christmas vacation. I had to take time out of work and stay home to rest. I attempted to give school a shot, even though I wasn't feeling well but after two weeks gave up. I went and saw my doctor who gave me my last two options. He said I could try IV Infusion treatments or have my colon removed. Instantly, I said the treatments: What 20 year old wants to go through "major surgery" when there are still medications available. I began the Remicade sometime around Valentine's Day 2008 and in the beginning they worked wonders . . . by July, they weren't working at all. BUMMER! During a phone conversation with my mother I said, "Can't I just have it removed, I'm sick of going through this ALL THE TIME, I want to be healthy." She wasn't too "keen" (sp?) on the idea but told me to talk to my doctor. That following Monday I had an appoitment to have my Remicade Infusion and because I still wasn't doing well, the doctor wanted to see me first. I went in and he said he was going to double the dose of the medication in the Infusion and if I wasn't feeling better in a week he wanted to "scope" me again. 10 COLONOSCOPYS - I DON'T THINK SO!! I turned to him and asked what having my colon out entailed, fully expecting him to tell me that I would need an ostomy bag for atleast 3 months. When he told me I didn't and we talked about it for a bit - I was sold! I wanted it out. I was sick of fighting this colitis. Like my dad said, "It was like a dog chasing its tail." I would flare up, be put on medication, begin to go into remission and then start to get worse again, he would change the meds, up dosages, etc. etc. It usually involved a yearly colonoscopy and well I was DONE!! He gave me the names of two surgeons and two days later I had a consultation. The first thing the surgeon said to me was "I'm gunna put it to you as simple as possible, no colon, no colitis." Sounded good to me!!! We went home and weighed the pros and cons of having and not having the surgery and just by what the surgeon told me, the pros won. That afternoon my father called and had the surgery booked for two weeks later.
I'm not kidding, when I say it felt like it came and went so quickly it did. I remember sitting in the doctor's office getting the surgeons names and the next thing I new I was in the hospital waiting to be put in my room. I had to go in the night before so that I could do I clean out prep. They brought me a gallon of "Go Lightly." All I have to say is it doesn't make you "go lightly!!" That's for sure. Anyway they told me to drink half of the gallon. I took one 4 oz glass of it and almost puked. They gave me nausea medicine and adavan (sp?), to relax me. But regardless of the drugs they put in me, I wasn't drinking that. I was even bribed by my father . . . it just wasn't happening. They switched the stuff I needed to drink with something that was only 10 oz and bubbly so it didn't taste too bad. I drank that no problem. The next morning the doctors came in and told me when I was going to be brought down. It was going to be early so I called my parents to let them know. The next thing I knew they walked in the room to stay with me until I was brought down. My mom lied in bed with me and I just felt hopeless. I knew this was what I wanted to do but the whole time leading up to the surgery I was looking forward to no longer having the colitis, I wasn't thinking about the surgery itself. I was nervous and scared, hoping that this wouldn't be something I regretted later on. Transport came and got me and my parents came down stairs with me. I was BALLING! I didn't want to do it anymore. I didn't want to leave my mom. But it was all too late. The woman pushing the gurney stopped in the middle of a basement hall, it was creepy, and told my parents this was where they needed to leave me. They both kissed me good-bye and told me they loved me. I couldn't stop crying. I was brought into Prep room 36 where a nurse came in. She tried to calm me down but told me she didn't know why they wouldn't let my parents come with me further. Come to find out it was because I was going to be getting an epidural as soon as I got in there. They gave me the epidural which KILLED. I just remember being hunched over a pillow that was on top of a table and crying because it hurt so much. I was then wheeled into the OR where a million, or so it seemed, nurses were waiting for me. They prepped me and put my hair in a hair net. I looked to my right and behind all the commotion was my surgeon, sitting in the corner. He smiled at me and said, "Hello Kate" but in a completely creepy way. The rest is history. I fell asleep and remember waking up to my father saying that our hometown baseball team traded one of their players. My response way, "Well, I just traded my colon for no colitis." My dad laughed, and off I went back to sleep. I do remember them wheeling me back into my room, with my parents sitting there waiting for me, and then them sliding me on to my bed. The next few days I don't remember at all. The Wednesday following my surgery the doctors told me that I was doing so well that I should be able to go home Friday. However, the Thursday following my surgery I woke up really nauseous. That afternoon I was vomitting and they didn't know what was wrong. I was shaking uncontrollably; to the point where Thursday night they had to put up the rails on the sides of my bed because they were afraid I was going to fall out. Before the shaking got that bad they had sent me down for X-Rays, when the doctor came in she explained that I had an ileus, which is when your small intestine shuts down due to shock. With that I had bile backing up into my stomach which was why I was nauseous. She explained that I needed an NG tube, not knowing what that was I asked. I never should have asked. She made a face and said that it was a tube that would go up my nose, down the back of my throat and into my stomach. It would be connected to a bucket that was on the wall that had a vacuum in it. It sucked the bile out of my stomach and I started feeling a little better. The only problem was that every time I tried to talk I would gag and throw up. My mom stayed with me until I fell asleep and then headed home. I woke up in the middle of the night, noticed she was gone, and called her to come back. My Dad drove her over and she spent the rest of the night rubbing my back while I threw up into those stupid kidney shaped basins, which by the way I never want to see EVER AGAIN! Then the uncontrollable shaking began. I barely remember that night! Friday I woke up and barely spoke because it hurt too much. By Saturday, I was more use to it and was finally able to talk. I wasn't allowed to eat or drink ANYTHING. As a matter of fact, my mother gave me like 3 sips of ice water and I got yelled at by a nurse for drinking it. Sunday afternoon my nurse wanted me to go outside. Looking like a FREAK with that stupid tube I fought it. Until she brought me a wheel chair that she labeled "Katelyn's BMW." Where she had put so much work into it I couldn't turn it down. My mom wheeled me downstairs and outside, it was the first time in 12 days I had been outside. It deffinately made me feel much better seeing as though I was REALLY down in the dumps because of this setback. When I got back to my room the doctor came in and pulled the tube out. I positioned my throat so that I couldn't feel it come up. It burned a little but I could talk again, and it didn't hurt. I asked him when I was going to be able to go home and he told me either Tuesday or Wednesday but probably Tuesday. I waited and waited and Tuesday was finally here. They still weren't sure and at about 4:00 they called him and asked him what was going on. He came up and examined me and allowed me to be discharged.
You have probably never been as happy as I was. It had been 13 days of ups and downs, 12 days of spongebaths, 13 days of not watching my hair, 13 days of wearing an UGLY Johnny, and more or less, 13 days of hell.
I went home and got right in the shower. I know its disgusting but it took me shampooing my hair 3 times to get the grease out. HOW GROSS?! Just the car ride home and my long awaited shower completely wiped me out. I got right into bed and cried. I was happy but depressed all at the same time. I was happy that I was home but I knew I had a long road to recovery. I wanted to be back to my normal routine: working 3 jobs, going out with my friends, and spending quality time with my family. I didn't want to spend the time I needed to lying in bed. Its not until a recovery like this that you know the true meaning of "one day at a time."
I came home on August 12th, and here it is August 28th and I'm still not completely back to normal. When I came home from the hospital I started getting a pain in my rectum. It started out small so I just assumed it was the fact that my colon had been ripped off that muscle and my "J-Pouch" had been sewn to it. I know it's gross, but this is who I am now. I went to the surgeon on Tuesday, the 19th for a follow up. He said everything looked good. I explained the pain and he said it might be the beginning stages of Pouchitis, the inflammation of the newly created pouch. He asked about pain and a fever - I had none other than what I had described to him. Walking in, around, and out of the hospital wiped me out and I felt like crap when I got home. The doctor had perscribed antibiotics to treat the pouchitis so I started them that night. My mom took my temperature that night too, and after I had told my doctor I didn't have one it was up to 101.3! The fever continued until Saturday night when it broke, but man did I feel icky all week. I also started the perks up again, so the pain was a little less but not by much. On the 25th I e-mailed my NP with my problems and she called me to ask questions. She said she would talk to the doctor and give me a call back. She called me back saying he wanted me in the following morning for a CT Scan.
That brings me to Tuesday. I went back to the hospital and had the CT Scan done. It was actually during the prep for the scan that not having a colon finally paid off in my life. Instead of having to drink two bottles of crap I only had to drink one. YEY!!! Anyway, I had to go see my doctor after the scan was done. When he came in he examined me and said that the CT Scan didn't show anything. No infection, not even inflammation to back up the pouchitis. He put me on more medicine to take three times a day with the hopes that it will take care of any rectal inflammation. That brings me to today. It's been a long month and I'm ready for this recovery bullshit to end. I'm not the type of girl that can sit in the house all day long and do nothing for weeks on end. I need to call the doctor tomorrow because he wants to see how the medicine is working. He said that if in a week or two I still have pain they will need to bring me in as an out patient, put me to sleep, and take a look inside. Honestly, as much as it sucks to have it done - I would rather them do it sooner and just figure out what the heck is going on.
With all of this surgery hospital crap there was another question posed to me: Are you returning to school in the fall?
We booked the surgery for the end of July hoping that I would be able to go to school. But at that time they were also saying that I would be in the hospital for 7 to 10 days and recovered within 2 weeks. Here we are 4 weeks after surgery and I'm still in pain; and not only that, but the doctor doesn't know what is causing the pain. So, needless to say: I'm not returning to school in the fall. I have mixed emotions about all of it. My younger sister moved away to school on Saturday as a Freshman and, surprising to all of us, is having a blast. I won't lie. Part of the reason I want to go back is because I'm jealous. I want this pain to go away. I want to be able to live in my apartment with my friends and just have fun, something I haven't done in AWHILE. I cried A LOT over the school issue, I didn't want to make a decision I was going to regret. But knowing my body the way I do, I know I need the time to rest and get back on my two feet.
I won't lie, I've cried ALOT over the past few weeks. I had no idea what I was going to feel like after surgery, I had no idea how long the full recovery was going to last, I didn't even think twice that there were even the slightest chances of "set backs" (which I have now had several of). To be honest, I HAD NO IDEA WHAT I WAS GETTING MYSELF INTO. The only thing I did know is that I made an adult decision, one that affected me greatly (so far more negatively than positively) and one that will continue to affect me for the rest of my life. When the doctor told me "No colon, No colitis" I couldn't imagine anything better. No more not knowing how you were going to feel on a given day, no more not knowing when you were going to be dealing with a flare up or be in remission, no more worrying that you weren't going to be able to make it to the bathroom when needed, no more not being able to eat corn on the cob at a summer cook out. I know, somewhere deep down, that this decision was the right decision I just need to let myself heal.
Even now I'm sitting here crying because I can't believe what I've gone through. To sit down and look back on everything my body has gone through - things I never thought I would come out of alive. When that NG tube was in, I felt like it was never coming out. I felt that I was never going to come home, and with time I did. I felt like never again was I going to be able to walk down my stairs without my legs shaking from the lack of strength. And now here I am, mobile again, beginning to drive. Yeah, I still have a little pain in the butt - but I guess it's pay back for all the times I have BEEN a pain in the butt.
My "Aunnie G" is one of my closest family members. If I wanted to be like anyone of my family members it would be her. I've always been close to her, she's my godmother, my friend, my old core member, my inspiration, and I could even go as far to say shes my hero. Not in the Batman, Superman, Spiderman kind of way but in a way I can't explain. We have a running joke that I can't read anything she writes without crying. About 5 days after I got home from the hospital I was at my Auntie D's house for both of their sons birthday parties. People clapped when I walked in, something I didn't expect. Anyway, I sat at the party and talked to everyone, I lasted the whole time and was so happy to be outside. At the end of the party, Aunnie G came out with a card. As she handed it to me I told her it better not make me cry and she told me it wouldn't. Well, IT DID! The outside the card read, "Healing is an inside out process. It begins in the heart with a glimmer of hope. The more we trust in it, the stronger is becomes until we are mended- body and soul." And on the inside the card read, "Good things happen when we believe." It was then that it hit me. No more crying that you regret the surgery, no more being upset that you have to sit in the house. You need to be in the house. You need to rest. You need to believe that you will get better, with time of course. She, being her, wrote me a little note inside. She told me that my body needed me, and its true. Since then, I've tried my hardest to just believe in myself and let God take control. That in the end this will all payoff, and it will just be a small memory that I can look back on and simply say . . . remember when . . .? I talked to Aunnie G this past Tuesday and I talked to her about me making my decision on going back to school. I cried and cried and then I realized she was crying. I didn't know why. I still don't know why. But I know that I am extremely hard on myself when I know I shouldn't be. I told her I felt as though if I didn't go back to school this semester I would be a failure. A failure? I just had my colon out. Anyway, it was after my conversation with her that I realized I couldn't return to school and that night I broke the news to my mom. She handled it A LOT better than I expected.
While I was in the hospital I ended up with 11 vases of flowers, bags and bags of gifts, and a wall full of cards. The cards and gifts continued with my return home. It is amazing how much support I have had through all of this. From my mom who ended up spending 4 of my worst nights with me in the hospital and would go home at 8 am and be back no later than 10:30, to my dad and sisters who were there everyday. To family that called and visited, sent flowers, cards, and gifts. And friends who did the same. I had people sending me things saying how proud they were of me, hoping that they would meet me someday - I had no idea who they were.
With the support and love of everyone I know I will eventually get through all of this. During my appointment the other day my doctor said that if it weren't for this minor pain in my body, I would be the poster child for this surgery. I have gotten through everything and even though I feel like the light at the end of the tunnel isn't getting any closer, it is a lot faster for me than it is for other children. I have to remind myself daily that it could be worse, and there are children out there (both my age and younger), as well as people older who have it a hell of a lot worse than I ever have.
As I said in my heading, my aunt and cousin had gone to the Jonas Brothers Concert while I was in the hospital. They heard the song "A Little Bit Longer," and when they came in to visit a few days later they told me it reminded them of what I'm going through.
The lyrics are:
Got the news today
Doctors said i had to stay
A little bit longer and i'd be fine
When i thought it'd all be done
When I thought it'd all been said
A little bit longer and I'll be fine.
But you don't know what you got 'til it's gone
And you don't know what it's like to feel so low
And everytime you smile, you laugh, you glow
You don't even know, know, know.
You don't even know.
All this time goes by
Still no reason why
A little bit longer and I'll be fine.
Waitin' on a cure
But none of them are sure
A little bit longer and I'll be fine
But you don't know what you got 'til it's gone
And you don't know what it's like to feel so low
And everytime you smile, you laugh, you glow
You dont even know, know, know
You dont even know, know, know.
You dont even know, no.
2, 3, 4!
And you don't know what you got 'til it's gone.
Don't know what it's like to feel so low, yeah!
And everytime you smile, you laugh, you glow
You dont even know! no! yeah! woah!
So I'll wait 'til kingdom come.
All the highs and lows are gone
A little bit longer and I'll be fine.
I'll be... fine
And its true: Just a little bit longer, and I'll be fine
I LOVE YOU ALL!
