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