Joplin Relief

I'm from Missouri and we do battle a lot of tornadoes around here.  So, when I heard about the Joplin tornadoes, I knew how drastic and devestating it had to be.  Also, I knew I had to help in some way, especially in my own state.   On a separate website, I heard that there are no ostomy supplies in Joplin because the tornado hit the hosptial.  A man who is the head of the Joplin Missouri Ostomy Association is collecting ostomy supplies from people and giving it to ostomates in need.  Please donate if you can!

Benjamin Moore
7589 SE Quaker Road
Riverton KS 66770

Living With an Ileostomy

So, living with an ileostomy can be really hard at times but after a while, you do get used to it. I had the bag for 3 months and during that time, I found some real tips and tricks to make living with it easier.  Here are some advice and instructions for living with an ileostomy.

Changing the Bag (for a 2 piece appliance)
        Knowing how to change the actual bag when you have a 2 piece is actually quite simple and can come in handy.  Sometimes the bag can get punctured (like from your cat like mine always did...ugh) or it just maybe a faulty bag.  When you find that it is not working like it is supposed to, all you have to do is empty it (which I will explain later), then unclip the bag from the wafer.  Throw it out and replace it quickly because the stoma can release stool pretty quickly and unexpectedly! Viola, simple. 

Changing the Whole Appliance (for 1 piece and 2 piece)
         When you need to change the whole appliance, it can be quite frustrating.  Try to change it at a time when you aren't releasing a lot of stool of when your stoma seems to be quieting down.  I always used to change it in the morning right when I got up because I hadn't ate in hours and my guts still seemed to be a little asleep.  For the changing of everything, you will need:

• A new wafer and bag
• Around 2 wet washcloths (make sure when you first buy them to wash them because the chemicals left on them can sometimes be harmful to your stoma)
• 3 or more dry washcloths
• Baby powder
• Ileostomy skin glue and/or pliable glues (shaped like doughnuts)
• A mirror
• A plastic bag
• Skin protectant wipes
• Scissors

First, find a place where you can spread out with all of your supplies.  I found my bed was a good place.  Also, start with an emptied bag.  Next, take off the appliance.  I would usually take the bag off first, then the wafer.  When removing the appliance from the skin, be slow and careful.  It can hurt pretty bad.  I found it better to press on the skin when removing the wafer so that the skin isn't pulled.  Throw out the appliance(s).  Then, take a wet washcloth and clean up around the stoma getting all the excess glue and stool.  Carefully wipe the stoma but make sure not too hard because the stoma can bleed easily.  Also, you can use your mirror to see around the stoma to make sure you got all of the stool and glue.  Next, take your dry washcloths and dry the area.  I then would take the skin protectant wipes and wipe the skin about 2 inches around the stoma.  This helps from the stool from destroying your skin.  Apply baby powder on top to make sure that your skin is completely dry (this allows for a better attachment).  Next, prepare your wafer.  I liked to attach the bag to the wafer before I put it on so that if I had a leak, I wouldn't have to worry about getting a new wafer.  Take the plastic backing off and get ready for the glues.  I liked to use both the pliable glue and the actual glue paste.  After a while, I would notice it was easier to attach the pliable glue to the wafer before I would take off my appliance, therefor making the change a much easier and quicker process.  Simply, take the pliable glue and warm it up in your hands, then shaping it to the size of the stoma hole on your wafer on the side that is in contact with your skin.  Make sure it gets to the very edge and that there are no gaps.  I then would apply the paste around the hole also to get a real good barrier.  Position the wafer around your stoma as evenly as possible and start rubbing around it to allow the pastes to warm and attach well to your skin.  Then, make sure the wafer sticky side is attached to the skin without any gaps or wrinkles.  Throw everything out and you are good to go!
          Sometimes, the wafer may need shaping around your incision (my incision broke open, so I had to cut off some of the wafer.)  Also, the stoma can be ornery and spit up when you are changing the appliance.  This will make it a longer process.

Emptying the bag
         When your bag gets about 3/4s full, it is probably best advised to empty it.  It's a pretty easy process and will happen many times a day.  First, make sure you have some gloves if you want them.  I found that I was more at ease when I didn't have to get my hands dirty.  Also, I liked to prepare the toilet paper before I would empty the bag.  I usually used 3 separate sets of paper with multiple pieces in each and set them on my leg.  Next, sit as far back on the toilet as possible with your legs spread apart.  Position the bag so that it falls between your legs.  Lift the end up and undue the hooking or closure.  Slowly, lower the end and let the stool fall out into the toilet.  Use your fingers to pinch the outside of the bag to get the rest of the stool out.  Take some paper and wipe the end of the bag.  Then take paper and wipe the inside of the closure.  Next, close up the end of the bag.  Finally, take the last of the paper and wipe the outside of the closed end for good measure.  After I was done emptying the bag, I would take some of the air neutralizing spray and spray the bathroom, if I was in a public place. 
       Also, my bag would fill with gas from time to time.  I had a filter on my bags, but if it ever got wet, the filter would no longer release the gas from my bag.  So, I would have to either release the gas when I would empty the bag or burp it.  Burping it is only possible for a 2 piece appliance.  Simply, I would be in a standing position and then unclip some of the bag from the wafer and the gas would come out.  Then I would reclip it and be all set. 

Traveling with an Ileostomy
       If I went anywhere, I made sure that I had extra supplies with me just in case I needed to change the appliance (I did have to do this once).  When I was in the hospital, my ostomy nurse gave me a little travel sized bag that kind of looked like a fanny pack (no you don't have to wear it lol, but that is an option).  Inside of it I would keep and extra bag and wafer, glue/paste, spray, gloves, a mirror, scissors, baby powder, disposable bags, and skin wipes.  Pretty much anything I needed if I needed to change the appliance or empty the bag.

Diet with the Ileostomy
       The diet with an ileostomy sucks.  There really is no way to sugar coat that.  You have to avoid anything that is roughage (raw fruits and veggies, the skins on fruits and veggies, nuts), insoluble food (some veggies, nuts, mushrooms, Chinese veggies, sausage casings)  and whole wheats or oatmeal.  Pretty much anything that could create a blockage, and anything that is healthy.  This website  has a special page specifically on dietary guidelines. 
        To prevent dehydration, I would eat at least one thing that was absorbent (carbs, potatoes) with every meal.  I still eat that way.  Also, I would drink a lot of gatorade, vitamin water, powerade, or water to make sure that I was fully hydrated.  This was my biggest struggle.  I'm not a big fan of drinking a lot, so I had to change my habits.  Plus, I would take a lot of immodium to thicken up my output.

Skin Care
       Sometimes, under the wafer, you can get dermatitis.  It looks pretty nasty.

http://www.allaboutbowelsurgery.org/Shared/stoma_care/clinical/skin_problems/soreness.htm

 It is usually caused by leakage or, in my case, an allergic reaction to the glues.  I ended up getting it and it is tender but extremely itchy.  I remember ruining wafers from all the scratching.  If you get it, treat it quickly.  You will feel much better.  I ordered a skin care gel from my ostomy supplier (Edgepark) that worked really well.  There are plenty of options and insurance will cover it.  I also bought little silicone sheets called Duoderm that worked really well.  When changing my appliance, I would put the gel on the dermatitis, then put a duoderm sheet on top (I would cut a whole in the middle for the stoma).  I would then apply the wafer on top of the duoderm sheet.  Eventually, the dermatitis went away.

Clothing Options
       I wore only baby doll tops and dresses when I had the ostomy.  I just found it easier and less detectable than when wearing regular clothing.  I went out and bought about 10 shirts before my surgery to prepare for the months with the bag.  Some people wear regular clothing and wear special belts that hide the bags.  But, I didn't really understand how the bag could fill up and not be noticeable or blow up from under the pressure of the belt restricted to the abdomen.  For bottoms, I usually wore low cut pants that wouldn't rub against the ileostomy.  We also mad a makeshift jean pouch (made from old jeans) that was like a pocket with a belt.  I would put the ileostomy bag in the jean pocket and hook the jean belt in my belt loops.  It worked really well and would allow me to not have to put the bag under my pants.  In this picture you can kind of see it on my right leg:

Pretty undetectable right? I really liked it. 

Showering with the Ileostomy

         So, I'm not going to lie, I didn't shower with the ileostomy.  Some people may want to, there are possible ways, but I just found it easier to sponge bathe.  Now, don't get me wrong.  I was not gross.  I made sure I was clean.  But, if you are going to have the ileostomy for a long time, you will probably want to find a way to to shower.  I only had it for 3 months.  I heard that some people put press and seal saran wrap around the wafer and take the bag off.  I don't know how that would completely keep it dry though.  Also some people, I guess, wrap saran wrap all around their body.  That seems extensive.  Other people also decide to just take off their whole appliance, shower with the stoma (make sure no soap gets on it) and then reapply a new appliance.  That seemed easiest except for when your skin is moist and you need to apply another appliance before the stoma spits up.  So, I opted for sponge bathing. 

Embarrassing Moments

         The stoma makes noise. A lot of noise.  So, when it sounds like a fart, just tell people the truth.  My friends were really understanding.  It actually kind of became part of our jokes for the summer.  Also, make some humor with it.  If not, you will be pretty depressed and embarrassed.  We named my stoma Mona.  Therefore, whenever she would spit up or make noise, we would go "Stop it Mona", or "Shut up Mona", or "Calm down Mona".  It makes dealing with the ileostomy just a little easier.

Little Tidbits and Tips

•  Sleeping can be a little frustrating.  Obviously you can't sleep on your stomach.  I mostly slept on my back and rarely slept on my sides (my insides were still a little sore and laying on my side would sometimes irritate them).  You'll get used to it after a while.
• Don't swim in chlorine.  It will irritate your stoma.  They have special coverings for the stoma when you get in water which you can also use for showering.
• Order whatever you need before you run out.  You never know when you may need to change your bag several times in one day
• A good appliance should be able to run for around 5-7 days.  At first, that may be a little hard, but eventually you will get around to that.
• Avoid animals with claws on your stomach.  My cat was the cause of many problems.
• STAY HYDRATED
• The stoma will more than likely change shape and size.  Make sure your appliances fit your stoma no matter what.
• Check for leaking often
• If you get a blockage, don't panic.  Call your ostomy nurse and they will guide you through it.
• Sometimes your bag can fill a lot in the middle of the night.  I would set an alarm half way through the night to check my bag.