Recovery Process

So now I have no colon and this bag attached to my stomach...great. The last 10 days I was in the hospital this time around is very fuzzy and I don't remember much. I do remember being in a lot of pain. Thank God I had a private room this time around. It was such a blessing to just deal with all this without a stranger beside me. My parents and/or brother were always there with me except for at night of course. 

My brother was a huge blessing. He's 5 years older than me and we're really close. But what he did to help me in the hospital was amazing. He was studying to be a nurse and is a CNA...he helped me change my bag and clean the stoma because I hated doing it. He would stay late with me and watch tv and just make me laugh to keep my mind off of everything else. He continues to be there for me and don't know what I'd do without him.

Leaving the hospital was probably one of the hardest things to do. I was scared to go home because of all the pain I was having and the fact that it's like a security blanket. You're in there for so long, becoming dependent on nurses to help take care of you...now you're home depending on yourself and family members. I was happy to be home and in my own bed but it was quiet, too quiet. I was used to people coming in and out taking blood or checking my vitals. I barely slept at night during my stay. It was no different once I got home. 

The pain is again indescribable...different pain than what I had originally but pain nonetheless. I had a long incision right below my bellow button and above my pelvic area. Of course it had to get infected and become even more painful. This infection required a visiting nurse to come everyday to clean it and stuff it with gauze to stop the puss. That was an extremely painful process in itself. The nurses were also there to guide me in changing my bag to make sure I was doing it right and that I was comfortable doing it. I didn't do it myself for the first few times. I had the nurses do it because it was gross.

I'll never forget my first experience with the visiting nurse. My parents will probably wonder why I mentioned this if they ever read it :) I was waiting for my nurse to come and I was using the bathroom. Well all of a sudden, I'm peeing and everything gets white and I get really dizzy and extremely hot. I start freaking out because I can't see squat and I feel like I'm going to faint. I hear the nurse come in and I hear my dad and brother talking to her. I start yelling for my dad or brother. They all come in the bathroom and there I am, sitting on the toilet leaning against the wall with my eyes closed moaning that I feel sick and can't see anything. My brother rushed and got me some water and the nurse came in and sat on the floor and began talking and taking vitals. This was our introduction...bet she wasn't expecting that. Haha, never saw her again after that day. 

I was dehydrated. One thing you MUST be careful with when you are living without a colon is your electrolytes and potassium and all that good stuff. I never drank enough water or anything when I was healthy and now I was being forced to drink A LOT throughout the day, which I was clearly having a hard time with. Fluids, fluids, fluids are most important. Water, Gatorade, V8 juices...anything with a good amount of potassium in it will do just fine. I try to drink enough but I know I'm not. I've only have one other incident like this one and it was about a week ago...hey, I'm trying. 

Countdown to surgery #1

The ostomy nurse came and gave me a bunch of brochures and information on what I was about to deal with. She was very helpful and answered all my questions. Surgery was set for a few days, Feb 24, 2011. She came and helped me pick a reasonable spot for my stoma. She put a red dot on my stomach and we were all set. Because I had lost so much weight and was on so much medication, there was some nervousness about going through with surgery. My nutrition was good though so my surgeon approved me and said recovery might be a little longer just because I was so sick to begin with. 

Here comes Feb 24 and I am happy, scared, anxious, nervous...every emotion you could have, I think I was experiencing. I was so tired of being so sick that I was ready to do this but I don't think it all really set in about what was going to happen. I wish my surgery was in the morning but of course not. I had to wait in anticipation all morning and afternoon. My surgery was around 2pm I think. Can't quit remember. My parents were there and planned to be there for the 3-4 hour surgery. Surgery is not fun and very scary. They wheeled me into the operating room which is just a huge white room with a whole bunch of strange looking equipment. There had to be at least five or more people in that room running around doing things.

I laid on the operating table and they told me to hold out my arms (as if I was being checked at security in the airport). They strapped my arms to the table and put some funny things on my legs so they didn't get blood clots. Some nurse was talking to me and I told her that I was freaking out and she said she was going to give me something to calm me down through my IV. So she did, then a few minutes, she put the oxygen mask over me and I just remember being so nervous watching all the nurses walk around and fiddle with me. Then I was out.

I woke up so out of it and confused. My parents were right by my side in the recovery room. It was around 11pm or midnight..don't remember. The surgery that was supposed to take 3-4 hours took about 8!!! My dad has explained me the reason for this a million times but I always forget. The surgeon told my dad that if he was in the position I was in in the operating room, he wouldn't last a minute. Apparently I was put in all type of positions. When I finally came around, I felt like a bus had hit me and I was colon-free. 

Ileo-what??

After a few weeks in the hospital with no progress, the surgeon made his way up my floor and into my room. He came up and spoke with me alone and then with my parents and I. He was very nice and seemed very knowledgeable. Stated there was a surgery that he specializes in where he removes the colon and constructs what they call a J-pouch out of the small intestine. The pouch will act as the colon over time, absorbing nutrients and liquids. The only real difference would be that I would go to the bathroom about 6-8 times a day or more depending. He made sure he didn't make light of the surgery because it is a very serious operation and removing your large intestine is a big deal. It was a lot to deal with and digest. He let me think it through and do some research.

I immediately started googling j-pouch surgeries and found an amazing website www.j-pouch.org which has been a life saver even till this day. I talked to many people through that site and read many life stories of people who have had the surgery and how it saved their lives and how it was ten times better than dealing with colitis or crohns. At that point, I knew deep down that I would most likely go through with the surgery. I did a lot of thinking alone and aloud with my family and friends and finally came to the decision that the surgery was my only hope of getting better, leaving the hospital, and ultimately saving my life. And so the process began.

My surgeon sent up an Ostomy nurse who specializes in these surgeries as well. Without a colon, I would have a temporary ileostomy. Ileo-what is exactly what I said and had NO idea what that was. Those of you who don't know as I didn't, it's where they pull out part of your small intestine (called a stoma) so that it's literally protruding out of your stomach, on either side of your belly button. Mine is on my right side. This is where your stool and gas will come out while the j-pouch is healing. Attached to your stomach will be a special bag that you can empty whenever it gets full and you completely change the bag every 3-4 days. I could take a picture and show but I think these details are enough. Feel free to google if you need a visual :)   

A state of confusion and what ifs

I arrive at the ER with my parents in the early evening. As I'm waiting to be called, I'm sitting hunched over grabbing my stomach rocking back and forth because of the pain...it was crazy. Finally I get called and go through the whole admission process. I don't remember much after that until I'm on a stretcher in the middle of the ER hallway. It was so crowded, they were just sticking people in the hallways. Numerous doctors and nurses came to speak with me and get details of what I was feeling and blah blah. My parents were doing a good job at trying to distract me from the pain. They had me on morphine which was barely helping with the pain. I was in the ER hallway on that bed for about 28 hours. I was on one side of the hallway then they moved me to the other side of the hallway near the nurses station then I got an exam room for about 3 hours before I actually got admitted to a hospital bed.

I think I finally got to my hospital room about 9pm the following day. They had me on dilaudid IV which is stronger than morphine and that was easing the pain but only for a short amount of time. I felt like I kept asking for it every hour but they would only give it to me every couple hours. All I really remember is being in a lot of pain and constantly using the bathroom and losing a lot of blood but not enough for a transfusion which was good. I remember the pain IV being AMAZING and instantly taking the pain away and putting me in a state of relaxation which I hadn't felt in months.

I saw a few GI doctors that worked in the hospital. They came and discussed how the pain was and what medications I would be taking which I was all too familiar with. They had me on an all liquid diet which SUCKS. I was getting liquids through an IV and was only allowed to eat jello, chicken broth, and those nasty boost/ensure drinks. I went from a thin but healthy 125lbs to a scary and deathly looking 90-something pounds. I was all bones. I must say it was pretty gross and I refused to look at myself in the mirror and HATED being weighed every morning by the nurse. I don't know what difference they were expecting to see. It was the same everyday, ugh.

Days turned into weeks and there was no progress. The doctors had me on a high dose of prednisone and about a million pills treated for colitis and nothing was working. Pain was the same, felt like I was always saying 8 or 9 when the nurse asked "On a scale of 1-10 on pain, 10 being the highest, what is your level?" I hated being asked that question, it got old reallll quick but hey they're just doing their job. The doctor(s) didn't really know what to do. They were kinda confused as to why the pain was so bad and not going away like it had previous times when I had a flare up. After being in the hospital for almost a month, they decided to send up a surgeon to talk with me and this is where a life changing experience began.

Let's go back to the beginning...

I am writing this blog in hopes that it will help other people who are in or who have had similar situations realize that they are not alone. I thought I was but not anymore. This will probably be a very detailed story of what I went through but I think it'll help my recovery process. It's reality and I need to accept it and hope the rest of you will too.

It all started at age 22 during my junior year of undergraduate school. I was diagnosed with Ulcerative Colitis, a form of inflammatory bowel disease (IBD) where the body pretty much attacks the colon. Symptoms are very painful, including bloody stool and extreme lower abdomen pain. I was put on many different medications including prednisone to help the symptoms. Prednisone made my cheeks puffy (where I got the nickname cheeks lol) and my stomach puffy and just isn't a good drug to be on in general. My mom has UC so she knew what was going on and what I was going through, unfortunately. She hasn't had a flare up in over ten years, thank God. The colitis hit me hard and never eased up.

It started to get a lot worse around Christmas time of this past year (2010) and I started losing more blood and became pale and weak and just overall crappy feeling. Attending a work staff meeting, I was in the bathroom during the two hours more than I was in the meeting. I was so weak and in so much stomach pain, it was pretty unbearable. After the meeting, all my co-workers kept telling me to go to the hospital because I didn't look good at all. I kinda brushed it off and figured I'd be okay. Truth was, I was scared as hell to go to the hospital because I'd never been and didn't know what was going to happen. The drive home was HORRIBLE. I honestly don't know how I made it the 25 minute drive to my house. I was crying the entire way. As soon as I walked in the house, I told my parents who were sitting in the kitchen that I needed to go to the hospital NOW. They looked terrified and called my GI doctor and asked them what to do. They said to go to the ER, that they'd call and let the hospital know I was on my way...