Preparing for Surgery #1

     My surgeon scheduled my surgery to be on May 19, 2010.  I could have had it earlier in the month (since I got out of school in late April) but I decided to go later so that I may go to a few grad parties and see my high school's One Acts.  I knew I wouldn't see my friends for a while because of the recovery time so I wanted to take a little extra time to see them.  I also had to figure out how I would juggle school with the surgeries.  The fall semester started August 31, and my second surgery would be around that time.  So, I decided to sign up for online classes while I was recovering from the second surgery.  I also had to quit my job, but if you have an actual career, you should be able to take enough time off before having to go back to work.  Just for reference, it takes about 6 weeks to recover from the first surgery and 4 weeks for the second surgery with a minimum of 3 months in between for the J pouch to heal.


Preparation
     You will be scheduled for an appointment or maybe more before the actual surgery.  One appointment was to get some tests and to draw the site of where the ostomy bag is going to be.  You will do a blood test and urine analysis.  The ostomy nurse will also introduce you to some of the ostomy appliances and show you how to use them.  You then have to lie down to see where they could put the ostomy, and also to sit up to see if there are any stomach folds that may get in the way of the ostomy.  They also check to see where your pants usually sit, therefore you won't have to get new pants.  I also believe I got some brochures about the ostomy supplies and some guidelines.  Here is a picture of my ostomy placement:

  
     As for your preparation, there is quite a bit to get done before the surgery.  First off, tell whomever you want to tell that you will have an ostomy bag.  I told my closest friends because I knew I would be hanging out with them over the summer and they would more than likely notice the bag eventually.  Also find clothes that you feel comfortable in .  Apparently, you can wear tight clothes but you have to watch how full the bag gets.  I, however, opted to wear only baby doll tops and loose fitting clothing just to make sure that no one would notice it.  You can also buy special ostomy belts that tuck the bag in then secure it around your belly so that know one will notice the bag if you wear tighter clothes.  My mom actually made a special little denim pouch for me out of old jeans.  She simply cut off a portion of the jean leg, closed the bottom, and then made a strap for it that would detach on one end. It pretty much looked like a denim purse.  I would then place the ostomy bag in it then put the strap across my body (like a crossbody bag).  I would then put on my shirt and it would kind of blend in with jeans.  It would camouflage the bag and also support it.  I also use to loop in it my jean loops if I was wearing a tank top or strapless shirt wear the strap would be noticeable. 
     Also, eat as much as you can.  You will not be able to eat for a while after the surgery because you need to wait for you bowels to wake up.  You will lose weight.  I lost about 15 pounds after the first surgery.  It is also kind of nice to treat yourself the night before your prep.  My parents and I went out to eat and ate a ton.  You will miss eating.  After the first surgery, it took 9 days for my bowels to wake up.  What is also helpful is to get whatever you need to get done before the surgery because you will be recovering for about 6 weeks and won't be able to get out much during that time.  I ended up painting my room the week before the surgery because I knew I wouldn't have time after the surgery. 
     In the few days before the surgery, you will need to pack your bag for the hospital stay.  Here's what you may need:

• Shampoo/Conditioner/Soap (the hospital soap made my skin dry and the shampoo made my hair oily)
• Robe/Slippers
• Things to keep you busy (books, games, movies)
• Chapstick/lotion (hospital air is really dry)
• Hygiene essentials
• Comfy clothes

     The hospital also sent me letters to help me prepare and they also gave me guidelines.  Your doctor may do something different such as telling you in person, but it was nice to have it this way so that we could have a hard copy of it.

The Prep the Night Before
     So, the prep before your sugery is the same as a prep before a colonscopy.  I did notice, however, that it wasn't as bad as a usual colonoscopy prep; I didn't have to take as many laxatives.  You won't be able to eat during prep day, so eat a lot the day before all the way up to midnight.  Also, drink a lot of fluids, particularly gatorade.  You will be loosing a lot of fluids and you do not want to be dehydrated before going into your surgery because if you are, then it will be difficult for the nurses to start an IV.  Believe me, drink your fluids.  I cannot count how many times the nurses have had to dig in my arms to try to get a good vein.  Also, make sure you have packed everything you need and plan for the next day.  Make sure when setting your alarm, you give yourself enough time to take a shower, because you will have to before you leave for your surgery.

The Day of Your Surgery
     You won't be able to drink any fluids today or eat.  I think this is to ensure that you won't throw up when you wake up.  You will have to take a shower using an anti-bacterial soap.  Wash everywhere and especially wash where they will be doing the surgery.  Wash that section again, just to make sure.  Wear comfy clothes on the way there, plus take off any metal you may have on you, including pony tail holders with the meal clasp or bobby pins. 

      That is pretty much a summary of your prep before the surgery.  Your doctors will give you more info and instructions, also.

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.