Ileostomy Basics

Having an ileostomy can be quite the confusing and frankly scary situation.  However, once you have the basics down and understand your own personal ostomy, then you are golden.

What Exactly is an Ileostomy?
       Well, an ileostomy is an opening in the lower stomach (usually in the right lower quadrant for this surgery) that part of your small intestine is inserted through to create a stoma.  Through this stoma, your waste is secreted and stored in an ileostomy bag appliance that fills up until you need to empty it. 



http://drugster.info/ail/pathography/3521/



http://www.cancerhelp.org.uk/type/bowel-cancer/treatment/surgery/if-you-need-an-ileostomy-for-bowel-cancer

The stoma kind of looks like a pair of lips.  If you are a science/medical nerd like I am, it looks kind of cool and is an awesome concept.  It is literally an inch of your small intestine that you can see, touch, hear (yes it makes noises).  But if that's not your thing, it may seem a little weird.  Also, because the stoma is a part of your small intestine that works constantly, it will literally move.  Sometimes, you can even feel it move.
      The ileostomy is important and necessary because the newly constructed j pouch needs to heal without waste moving through it.  I had a loop ileostomy, which is literally a loop of your intestine pulled through your skin with a cut half way through the intestine so that waste is excreted but nothing goes into the j pouch. 

Ileostomy Supplies and Appliances
       The ileostomy actually does require quite a bit of supplies.  However, your insurance should cover most of the costs.  These supplies include:

• Ileostomy bag- either 2 piece or 1 piece.  2 piece has a detachable bag from the wafer (the part that sticks to your skin that has a whole in the middle for the stoma), while the 1 piece does not have a detachable bag from the wafer
• Adhesive glue- either a paste or maliable ring to help hold the wafer onto the skin and to seal any holes and create a barrier against any leakage
• Skin protectant wipes- small, sticky wipes that create a barrier between your skin and the acidic stool just in case there is a leak.  It is also sticky to ensure that the wafer sticks to the skin.
• Scissors- small, medical scissors to cut the wafer to size if need be
• Cheap washcloths- to clean up the stool around the stoma when changing the bag and wafer
• Baby powder- used to ensure that the skin is dry and allows for the wafer to stick to the skin better

Optional supplies include:

• A mirror- sometimes included with your package of first time supplies, but used to see around the stoma that is hard to see from your angle
• Gloves- sometimes people may use gloves when changing the appliance to prevent getting any leakage of your hands
• Ostomy belt- a stretchy belt that attaches to wafers that have the attachment on them to ensure that the ileostomy is securely attached to the body. Good for when the bag gets full because the weight may pull on the wafer
• Odor sprays or deodorants- used to eliminate the odor of the stool.  The sprays are good for the rooms or restrooms that you drain the bag or change the bag, and the deodorants are a liquid that is inserted into the bag to make the stool not smell when you drain or change the bag

        One of the most important components is obviously the ileostomy bag or pouch.  I used a 2 piece, medium sized, clear with a felt underside bag that had a filter on it which allowed gas to move through but not odor.  With a 2 piece, the bag snaps onto the matching wafer.  Make sure that the bag and wafer are corresponding, though, because if you don't have the same size on both, there will be major leakage (happened to me twice- once in the hospital which caused the opening of my incision and once at home).  Also, make sure that the bag is securely snapped onto to the wafer (I again have experienced leakage by it not being snapped together correctly).  It should also be noted that the 2 piece is a good choice if something happens to the bag but not the wafer (for instance, if the bag is punctured with a pin or other sharp objects).  This ensures that you don't have to change your entire appliance just for a problem in the bag.  Bags come in all shapes and sizes.  Smaller ones require more bathroom trips to empty but less noticeable, medium ones are about 10 inches and can go quite a long time and still not be very noticeable, and large ones hold much more but are longer, therefore making them more noticeable.  You can also choose whether you want a clear bag, opaque bag, or completely felt covered bag.  Clear allows you to see the viscosity and contents of the stool (can sometimes be very important) while the others make it more discrete.  Also, the bottom of the bag has some sort of closure (snaps, clips, Velcro) that allows you open it to drain but then also close it again.  I used a bag with the Velcro and it seemed to work fine for me. There are hundreds of options and it really is up to you what kind you use.
           Another important component is the wafer.  I used a 2 piece bag (separate) wafer that was presized to my stoma and square in shape.  With a 2 piece, you have a separate wafer that you can change preferences over.  If your stoma changes shape (it more than likely will), you can buy a different wafer but still keep the same bags.  Also, you can get wafers that you can cut to size if your stoma is a strange shape.   If you get a one piece, the wafer is already connected to the bag. The wafer has an adhesive backing that attaches to the skin.
          When having an ostomy, the adhesive on the wafer is not strong enough to support the bag (this lead to my wafer almost falling off during my hospital stay from the complications, messy).  Therefore, I strongly advice using the glue/pastes that are available.  These are brown thick glues that you squeeze around the ring of the ostomy bag to secure it to the skin but also to create a barrier against any leakage.  There are also maliable rings that you can use that you simply warm and shape to the size of your ring on the wafer.  I used the glue for a while, then started a combination of the glue and the rings for extra security. 
           Skin protectant wipes can also be very helpful with the attachment of your appliance to your skin.  These look like small wet wipes but are very sticky.  However, they also create a thin barrier on your skin, therefore creating any skin irritation.  I didn't always use these, but after I got dermatitis (which I will explain later) I found these to be very helpful.  Initially, I didn't think scissors would be that helpful, but, believe me, they are.  If you ever need to change the shape of your wafer or shorten the sides because the wafer is getting in the way of your incision (like it was in my case) then scissors are very important. Cheap washcloths are absolutely essential.  When you change your whole appliance (bag and wafer) you need the washcloths to clean up the mess. It can get kinda messy.  So, go to walmart, buy some cheap washcloths, wash them when you get home (there can be chemicals on the cloths that may irritate your stoma) and use them and bleach them when you clean them. Also, baby powder can be important to changing your appliance.  This is used to create a dry surface for the wafer to attach to.  The wafer will not attach to the skin if it is moist. 
          As for optional supplies, I used most them on a daily basis, but it really up to your preference.  Gloves are really handy when you are draining the bag.  I don't like to get stool on my hands (I don't know anyone who would) so I took gloves with me everywhere.  A mirror is somewhat a good thing when you are changing your bag.  Sometimes you can't see the bottom side of the stoma, so the mirror allows you to see that and see whatever excess stool you need to clean.  Also, an ostomy belt seems to be a pretty good item.  I got mine free in the hospital, but they have others online.  It helps with supporting the weight of the bag and also prevents it from popping off by keeping the appliance close to your skin (had a bad experience and realized that the belt is a great invention).  Finally, odor sprays or deodorants can be really handy.  The stool is going to smell bad, really bad.  It's kind of nice to have a spray when you go somewhere public.  Also, the deodorant that goes into the bag really helps with preventing any kind of smell.
        

Complications

So, when I left the hospital, I was absolutely ecstatic.  I was very happy to be home.  But, by a week later I had to go back to the hospital because of some complications. 

The Week Prior to Hospital Stay #2
       As I mentioned in my earlier posts, my incision had started to open up towards the end of my stay at the hospital.  My surgeon's associate said to clean it with peroxide and it should be fine.  Well, like I was told, I cleaned it with peroxide everyday.  BUT when my Home Health Nurses came  to check up on me, they said to quit doing that because peroxide will destroy healthy cells, therefore preventing any healing.  They told me to just clean it out with saline everyday and cover with gauze.  To give a little background on my home health nurses, the hospital assigned them to come to my house 3 times a week to check on how I was doing and to help me with my new ostomy.  They generally would check my vitals, watch me change the ostomy, and check my incision. 
        During her second visit, my nurse noticed that I had a rather high resting heart rate (130s when it should be between 60-90).  She felt that is was probably just my body reacting to the trauma of the surgery and not to worry too much.  But, she was worried about my incision.  The incision was growing quite quickly.  It was open about 6 inches lengthwise from the bottom(remember it is only an 8 inch incision) and was starting to open at the top of the incision also.  She said to keep an eye on it and call her if I had any concerns.  About a week after leaving the hospital, she checked my incision and was shocked.  It was now open about 2 inches wide plus the 6 inches in length.  She recommended that I go to the emergency room. 

Hospital Stay # 2
        That night, my parents and I went to the ER to hopefully get my incision restitched.  However, when I was getting my vitals checked, they noticed that my resting heart rate was above 150.  Extremely high and dangerous.  They took me to one of the beds and two doctors came to assess my incision and my heart rate.  They looked at the incision and found that it was no way infected, but that there was nothing they could do about restitching it.  It was already over 2 weeks since it was first opened and bacteria could already be living it in and they didn't want to risk creating an infection.  However, they were very concerned about my heart rate.  They had me do a CT scan of my chest to see if there were any clots....they didn't find any.  They then decided to keep me overnight in the Telemetry (heart monitoring) section of the hospital with heart monitors.
         Over the next few days, my heart rate started to go down slowly but surely.  They found that I was dehydrated with low sodium levels and assumed this was making my heart rate so high.  They then began to fill me with fluids with high sodium levels but found another problem: I was starting to get fevers.  They thought that maybe I had an infection in my incision so they started me on antibiotics.  When this didn't prevent my fevers, they assumed that maybe the infection was somewhere else in body or that it was so small in my incision that it couldn't be seen.  To find where the infection was, they decided to do this strange test, I'm not sure what it is called, but it involves taking blood, filling that blood with radioactive particles, then reinserting that blood into your body.  In about two days, they take a CT scan of you to see if any parts of you are glowing.  It was a running joke in my family that I was radioactive after that test...and technically I was (the radioactivity doesn't wear off for about 3 months lol!).  However, when they did this test, they couldn't find any glowing parts indicating an infection.  Luckily, my fevers started to go down, and they assumed that it was because my lack of walking (I'm a pretty lazy person, especially after this surgery).  I was somewhat of a medical mystery because a lot of times they seemed dumbfounded when they couldn't figure out the causes of my complications. 
            As for my incision, I stated earlier that they weren't able to stitch it up because of the risk of an infection.  However, I did see a surgeon who was very thorough in analysing the state of my incison (he stuck his finger and rubbed hard into the incision to determine that it didn't have any pus, let's just say that it hurt, A LOT).  He put one stitch in the middle of it to prevent it from widening.  Unfortunately, the stitch broke a few days later, BUT my incision luckily didn't widen. 
              All in all, I was in the hospital for a total of 7 days.  This makes my total for the summer, so far, 18 days.

Moral of the Story
         So what did I learn from this frustrating experience?  Drink plenty of liquids.  My doctors didn't allow me to use immodium or any medical thickeners of the sort in the first few weeks because they felt it may hinder the healing process, so I lost a lot of liquid.  Because you can't take meds to thicken your stool in the first few days, you will want to eat a lot of thickening foods (potatoes, rice, noodles, white bread, starches, bananas, etc.)  Also, watch your heart rate.  If it gets as high as mine, you will absolutely know that something is wrong.  Every time I stood up I would get out of breath within 5 seconds.  You cannot risk overworking your heart that much.  Your heart rate (at least for me) is a great indicator that you are dehydrated.  You will probably not be thirsty when you are severely dehydrated because when you are dehydrated, your potassium levels are so low that they cannot send messages to your brain saying you need hydrated.  Kind of a vicious circle, huh?

Medical Tests, Medicine, and Devices

• CT scan- large x-ray that goes all the way around your body to find problems.  Need an IV with iodine contrast to spot this problems
• Heart monitor- a device that shows your heart rate and rhythms
• IV- fluid administration
• Vitals- blood pressure, temperature, and heart rate
• Antibotics- can't remember which one I was prescribed but it was to fight my suspected infection
• Tylenol- used to lower my fevers
• Blood thinner injection- very small shot in the stomach that somewhat stung. Used to prevent any blood clots in my body from forming (blood clots are common after a surgery)
• Doppler ultrasound- literally an ultrasound on your legs to make sure that you do not have a DVT (deep vein thrombosis).  Used to figure out the reason for my high heart rate
• Radioactive tagged blood particles test- used to find my infection

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

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)

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.