Surgery #1 (Construction of J pouch and Ostomy)

        On May 19, 2010, I went to the hospital for my first surgery. I remember riding in the car at 5 am in the morning (very early) listening to Edward Sharpe and the Magnetic Zero's song "Home" and thinking how happy I was going to be when I no longer had UC.  I wasn't scared for the surgery at all.  It was going to make me live again.
        We arrived to the hospital and they admitted me to a room to get ready.  I put on a gown and then they helped me put on some stockings that would help with circulation to prevent blood clots.  And then they piled a ton of blankets on me (it was so cold!) and started my IV. I spent sometime with my family while they were prepping the OR.  They gave me some medicine to make me relax which didn't really make any sense because I was already very calm and ready to just get rid of my diseased colon.  I guess it's just protocol.  Then, they wheeled me into the surgery, gave me the anesthesia, and I was out. 

Waking Up
        I woke up in Recovery and felt pretty good.  There was a little bit of pain but not a ton.  I had a nurse waiting near me and when I asked for morphine she would give me some.  I don't remember much.  It's all a little hazy.  I do remember, though, that at one point my nurse was on the other side of the room and I tried to call her and she couldn't hear me.  But, when she got to me I said I need some more painkillers, and she said "Well, why didn't you ask?!"  Hmmmm, I did. 
        They eventually wheeled me into my room and I instantly fell asleep.  That's pretty much all I did for then next few days.  I couldn't eat because my bowels needed to wake up and I couldn't get up and around because I was still in a lot of pain when I moved or used my abdominal muscles.  However, that night, my nurse noticed that they put the wrong size bag onto my wafer (I'll explain the different appliances, later).  It was leaking into my incision.  This would later become a problem. 

The First Few Days
        I slept a lot.  When I say a lot, I mean probably 21 hours a day, at least.  A LOT.  So, I really don't remember a lot from those first few days.  What I do remember is a few things here and there. For example, on day 2, one of my nurses decided I needed to move around. So, she made me roll back and forth onto my sides.  Trust me, the first time you will move with that huge incision is going to be extremely painful.  It will literally take your breath away.  Definitely use your morphine/pain pump.  On day 3, they made me move out of the bed.  So, I rolled on my side, pushed up with my arms, then walked 2 feet to sit in the chair.  I was there for maybe 30 minutes, but then had to go back to the bed because I felt tired, couldn't breathe really well, and felt nauseous. 
       During one of the first few days (not quite sure which day, again very hazy), my ostomy nurse came to visit me.  He told me a lot about my ostomy and the appliances and also showed me how to change them.  He said to change them about every 4 to 5 days.  He also had an intern with him to learn more about medical things. 
       During these first few days, I also realized that I was extremely emotional.  I could cry on demand.  I remember one night, I was having some cramping in the j pouch and I just broke down. I was balling my eyes out saying how painful it was.  My nurse looked a little overwhelmed and told me to press my pain pump.  It didn't really help.  I don't think it ever really did.  Now, I realize that I was just having an emotional break down, plus pain, and anesthesia (which makes me cry a TON) which was causing the sob fest.  Kind of embarrassing now. 

Middle of the Stay
      About halfway through my stay, they needed to take me into a new room.  This was because I was in the heart section of the hospital (not quite sure why I was there), but they moved me into Med Surg. At this time, I should have been walking more, or at least sitting up.  But I felt so nauseous and was still in a lot of pain when I moved.  Speaking of pain, I should mention that when I was just laying there, I felt fine.  No pain at all. But, when I moved to sit up, or even to lift my bed up, it literally took my breath away.  I also realized, that my pain pump, which was filled with Morphine, made me really sick.  I remember being in a lot pain and pushing my pain pump and then dry heaving instantly.  And I must say, dry heaving days after you just had your stomach cut into, is one of the worst pains you will ever experience.  After that, they started trying different pain medicines to see which ones I could tolerate.  But we realized that nothing besides Tylenol, aspirin, ibuprofen, etc. would keep me feeling comfortable without throwing up. 
      A lot of people, well at least I think a lot of people have the same concerns as me, are worried about throwing up after the surgery due to your bowels not waking up.  I can say that I never threw up from my bowels not waking up.  This is partly because I refused to eat or drink until I was for sure that I wouldn't throw up.  But also because I wasn't hungry because I was so nauseous.  They wouldn't let me eat until I wasn't nauseous.  I even had a NG (nasalgastric) tube to reduce the nausea. I only threw up from the pain meds and Maalox.  They gave me Maalox for one of the meds I was taking that could give me stomach ulcers.   For some reason, I cannot stomach Maalox or anything that tastes like chalk. 
     During this time, they were trying to make me walk around to prevent blood clots and to heal faster.  I hated walking.  I seriously would get so upset when they would make me walk, especially when they had me sit in a chair and left me there for 2 hours when they said they would be back in 30 mins.  I wasn't very happy about being lied to.  But eventually I would walk around my room (it was huge) and I would try to convince them that that would suffice for walking for the day.  I also have to mention that they gave me a breathing device that I would have to breathe into it for 10 seconds 10 times every few hours and it would supposedly prevent pneumonia. 

Eating and the end of my stay
      Towards the end of my stay, my surgeon was getting concerned with me not eating.  He was afraid that soon I would have to use IPN (intraparitoneal nutrition) or tube feeding to get some nutrients in me.  At this point, I realized I need to start eating.  I first started out on a clear liquid diet.  After I could handle that, they started me on all liquids (which included pudding, ice cream, milkshakes).  After this went well, I started eating.  I'm sad to say that I do not remember what my first meal was.  It was something light though.  I do remember, though, that on my last day, I had pancakes and bacon for breakfast, even though it was really hard to eat a lot.  I didn't eat much because my stomach had been so empty for so long. 
     Also around this time, my incision broke open.  We think it is because of that first night when the ostomy leaked on the incision.  We figured that the acid and enzymes in the stool decomposed the glue that was holding the incision together. This incision came to be one of my biggest problems throught this whole process.
      So, all in all, I went 10 days without eating, 11 days in the hospital.  I lost 15 pounds and was extremely weak and was easily exhausted.  My surgeon's associate  (my surgeon was out of town) came to see me and explained what I would be experiencing in the next few months, scheduling my next appointment, and how to reach them if I needed medical advice. 
    Then finally I was discharged.

Tubes and Stuff
      I had a lot of tubes and medical things that I had to experience.  I will name off all of them, so you may prepare yourself.

• NG (nasalgastro) tube- goes through your nose, down into your stomach to drain the stomach (helps with nausea. Hurts A LOT when they pull it out.
• IV- obviously in my arm (usually the crook of my elbow) to administer fluids and medicine
• Drainage tube- a tube with a balloon on the end in my stomach to drain the fluids that may accumulate around my abdominal cavity. Also hurts a bunch to pull out
• Pick Line- an IV type tube that is actually inserted into your vein all the way through your heart.  Very uncomfortable.  Only needed if your IVs fail.  It also helps to administer fluids and medicine quicker
• Random blood tests- blood tests to check to see if you are still doing well.  Unfortunately, they always seem to take your blood at 3 AM....almost everynight
• Ostomy bag- bag that drains your waste outside of the body to allow your j pouch to heal
• Catheter- in the urethra to the bladder to drain your urine until you are able to start walking around enough to walk to the bathroom.
• Compression stockings- stockings on your calves to increase the circulation through your legs to prevent blood clots.  On until I was walking around a lot.
• Inflatable compression sleeves- also on your calves (over the stockings) to again increase the circulation and prevent blood clots
• Spirometer- a breathing device which you breathe deep breaths into to prevent pneumonia

Also, it is routine to check your vitals every 3 hours (blood pressure, heart rate, and temperature)

My UC Background

       When I was six, my mom started getting really sick.  At the time, I didn't know what it was, why my mom was always in her room and always tired.  Eventually, after a month of being extremely sick, my dad took my mom to the emergency room to find out that she had Chron's Disease.  At admittance, she weighed 88 pounds, was throwing up everything, had a racing heartbeat, and looked skeletal.  After a few weeks in the hospital (including her birthday) my mom came home and started getting better.  Of course, back then I had no idea what was going on with my mom.  All I knew was that she was sick, but I had no idea to what extent.  Little did I know that around ten years later, I would be battling almost the same thing.

         It was my sophomore year in high school and I was working hard rehearsing for my school's production of West Side Story.  I was super excited that year because I was chosen for a solo.  When October hit, I noticed a little blood in my stool.  I thought nothing of it, only that I would watch for more blood over the next few days.  Well, over the next few days, I did notice more.  I was hesitant to tell my mom because I was afraid she would be worried about me since she had Chron's and knew the symptoms.  We waited a little while until the blood got worse and I got more stomach pain.  We went to my doctor and she suspected that it could be Chron's since I had the symptoms and there was family history with it.  She checked for fissures (very painful experience) and gave us a number and recommendation for Children's Mercy.  Since I was only 15, I was unable to go to my mom's GI, so we had to go downtown. 
         A few weeks later, my symptoms got much worse.  My stools were tar black, I had many stomach aches a day, and it was starting to affect my school work.  I remember being in the bathroom after having a terrible stomach ache and looking into the toilet and being extremely afraid for the first time for my life.  We still didn't know what was wrong with me and my appointment for my GI was still weeks away.  Eventually I had that appointment but I was already very sick.  I had lost probably around 10 pounds and was getting fairly anemic and weak.  They scheduled a colonoscopy two weeks from that appointment.  The next week was the week before opening night of my school's West Side Story production.  It was almost impossible for me to participate.  I remember having stomach aches and running to the bathroom in between stage time, hoping I would get back before my next scene.  Also, back home, my sister and I decided to have a Halloween party.  I got off rehearsal and went home, excited for this party.  I ate almost everything in sight, candy, pizza rolls, bagel bites, taquitos.  BIG mistake.  I missed most of my party because I was in the bathroom. 
        The week of the production and a week before my colonoscopy, I went to school feeling absolutely awful.  I was in orchestra when I realized I had to go home.  I had 5 trips to the bathroom that day already and was extremely lightheaded.  I asked my teacher if I could go to the nurse and then grabbed my sister to go with me to my locker to ensure that I wouldn't pass out while getting there.  I luckily didn't pass out but I did go home where I laid in the recliner and still felt like I was going to pass out.  My mom tried to feed me soup but I didn't want to eat.  It would make me go to the bathroom and be in pain. Finally my mom called my GI and they said to admit me to the hospital.  Well, I was admitted and they suspected some sort of IBD.  I eventually had a colonoscopy and they found Ulcerative Colitis.  When I left the hospital drugged up on prednisone and asacol, I had lost 15 pounds.
       That night was the opening night of West Side Story.  I actually felt up to seeing it so I watched the musical in the front row, seeing someone else sing my solo.  I made it up to myself by performing the next two nights.

        Fortunately, I went into remission for the next year and a half.  I was down to 4 asacol a day and feeling amazing.  However, I did get sick again. It was the week of my school's production of Noises Off! I had a lead but it was extremely stressful.  This was also following and extremely stressful production of Joseph and the Amazing Technicolor Dreamcoat.  I think the stress of both productions triggered my colitis out of remission.  I eventually went on prednisone again and higher doses of asacol.  After this didn't work, my prednisone was increased to 60 mg a day plus Imuran and an enema.  That summer, I went on a music trip to Europe.  I almost had to cancel because I was so sick but I opted to go.  Miraculously, I went into remission when I went to Europe but that only lasted 2 weeks.  I came back home and got sick again.  I had extreme moonface, irritability, and gained 20 pounds of water weight.  I had such low self esteem going into my senior year which is supposed to be one of the best years of your life.  Here are some comparisons of what I looked before and after moonface in a difference of only 3 months:

                           
 
                      

                                                                                               

      Eventually I got so sick that I had to be hospitalized during the rehearsing months of the production Guys and Dolls.  This year, however, I could not miss the opening night because I was the lead. I was also known as the girl who was always hospitalized during the musical.  Great record.  Also,during the colonoscopy, they found some abnormal cells in the lining of my colon.  I would have to get another colonoscopy in the spring right after graduation to check for cancer.  I eventually went into remission just in time for opening night.  A month later though, I got sick again and was recommended for Remicade and suppositories.  This did put me into remission for a few months but it did come back.  After that, I never went into remission again.  I also had that colonoscopy and luckily I didn't develop cancer.   I was getting used to my disease, though.  I knew it would always be the worst in the morning and that healthy food only made things worse.  The irony of that situation, though, is that I decided on Nutrition to be my major at college, probably because I missed healthy food so much.  That fall I went to college.  I did everything all college kids do, except with UC symptoms.  My stats class was at 8 every morning, and every morning, about half way through that class, I would leave for about 15 mins to go to the restroom for my stomach aches.  I'm amazed I got an A in class considering that I missed so much of it.

      That fall, I also realized that I had an allergic reaction to the remicade.  I started getting a rash right after my last infusion.  So, we had to find some other alternative.  Next came Humira.  Humira is horrible.  I used to dread the night I would have to shoot up some humira.  It's some of the worst pain I had ever been in. But, of course that didn't work either.  I tried alternative medicine like heavy duty probiotics or aloe vera juice but to no avail.  After having a consistent stomach ache for 4 hours, I decided I needed the surgery.  I was missing out on the college experience having to come home every weekend for humira shots or blood tests.  Plus, I was sick of being sick.  I needed my life back.  So, we made arrangements for my surgery this summer.  And at 19, I lost my colon and my disease.