Sunday, January 23, 2011

Technicalities of the J Pouch Surgery

Overview
      So, for a J pouch surgery, what they do is they remove your whole colon (colectomy) and in most cases your rectum (but they leave the muscles).  They then fashion the end of your small intestine into the shape of a J which brings the name J pouch:

http://www.uwhealth.org/surgery/ileal-pouch-types/10491

They then connect the bottom of the J pouch to the rectum.  However, after this amount of trauma, your pouch needs to heal.  That is where the ostomy (or to be technical, ileostomy) comes in play.  The surgeon cuts a whole in your stomach approximately near the marked area your ostomy nurse had drawn on.  They take take some of the small intestine and pull it out of the hole like a loop, hence the loop ileostomy.  They then cut half way through it so that the upper hole empties the waste and the lower hole leads to the j pouch.  It is sutured onto the outside of the skin and, viola, you have a stoma:
    
http://av-pc.cx.cc/t/?key=loop-ileostomy-takedown.html

The ostomy bag then goes over the ileostomy to contain the waste.  After at least 3 months, it is time for the Take Down.  This surgery is much easier than the first one.  It involves taking the loop ileostomy, cutting off the stoma (since the intestine would act like dead tissue if reinserted in the body), and sewn back together to let you operate with your new J pouch:
     
http://lalupe7.297m.com/loop-ileostomy-takedown.html

Incisions
      There are two different ways to perform the J pouch surgery.  One is an open surgery which is what I had. It is one large incision down your stomach:
    
http://www.cumc.columbia.edu/dept/cs/pat/colorectal/procedures.html

The other option is laparoscopic.  This procedure has several small incisions where the laparoscopic tools were inserted and a medium incision running horizontally far down your stomach (similar to a c-section).  This illustration is fairly close:
      
https://login.medscape.com/login/sso/getlogin?urlCache=aHR0cDovL3d3dy5tZWRzY2FwZS5jb20vdmlld2FydGljbGUvNzEwMjczXzI=&ac=401

Saturday, January 22, 2011

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)