Q&A - what is the process?

Spreading awareness about Crohn's and Ulcerative Colitis is important to me because I feel that it sets the patient free. At least that is how it makes me feel, so that is what I am going with. For me, spreading awareness about IBD now goes hand in hand with spreading awareness about ostomies - specifically ileostomies since that is what I now have.

Right now I want you to click on this link that will take you to a YouTube video explaining the difference between a COLostomy and an ILEostomy. Most people are more familiar with a COLostomy, heck even I wasn't sure what I was doing before I went into surgery! THAT is why I want to share my experiences and educate the population.

And here is a labeled visual of the "guts" in case you need it for reference.

I'll let you in on a secret. Before surgery was an option for me, like - before I started googling and doing internet research on ileostomy this is what I thought...I thought that a small circular hole was cut in the abdomen and then fitted with some sort of anti-bacterial plastic ring to which you attach/adhere/click a bag of some sort on. Clearly my knowledge of advanced medicine is NOT GOOD. Which, is kinda sad considering what my husband does. But seriously - how was I to know what this ileostomy thing was all about? All I knew was - no colon and bag. My mind is strange, what can I say.

As I continued to think about my original idea of an ileostomy - it dawned on me that friends/people who would never have a reason to think about what an ileostomy is might think the same thing I did. Okay, maybe not. But, there were/are probably lots of misconceptions about WHAT an ileostomy looks like or what a day is like with an ileostomy. So guess what? I'm here to tell you! It's probably going to be a 2 or 3 part post because there is a lot to say. Or maybe I am just wordy. Or both. Okay, I just get verbose when discussing things I am passionate about.

If you followed the rules and watched the video and then looked at the little anatomy picture you probably have a BETTER idea of what an ileostomy might look like in real life. For sure a better idea than I had before I did my research. I would love to show you a picture of my little rosebud of a stoma - HOWEVER since I am fighting pyoderma (see previous post) and a staph infection, it isn't exactly the picture of a "normal" stoma so I don't wanna go there.

I have a LOT of people ask me LOTS of different questions about my ileostomy, how it works, when do I "go to the bathroom", can I take a shower, does it get in the way, and on and on and on. I thought I would start answering these type of questions to eliminate some misconceptions people may have.

How do you get it to stay on? Answer, with products designed especially for ileostomies! Here is a picture of my "set up" on a change day. A change day is the day that I take my pouch off and put a new one on. Right now those days are more frequent because of the pyoderma and staph infection. I don't get as much "wear time" as I should from each pouch because the adhesive begins to break down due to the ointments that I have to use on my skin.

Let's take a tour. Starting in the upper right corner we have Stomahesive stoma powder - supposed to be used as a protectant for your skin. You sprikle it on and brush off the excess to create a barrier between the skin and the adhesive you are about to apply. I do NOT use it like that because I find that it actually PREVENTS the adhesive from sticking. You'll find out how I use it at the end of this tour when I describe my "process". Also please note that I am linking to the brand's that I use - there are a LOT of different manufacturer's out there to choose from.

Next up is Arglase powder. Arglaes powder is an antimicrobial that is used in wound healing, specifically ulcers and lesions. I use it for the spots of peristomal pyoderma. Again, I will explain more specifically when I get to the "process" portion of the post.

The taller cannister is skin barrier spray. This is sprayed directly on the peristomal skin (NOT the stoma itself) and is supposed to provide a protective and sticky barrier between your skin and the adhesive on the pouch.

Then there is a roll of paper tape. Pretty high tech. Sometimes I have to tape down my edges. The nature of my wound (due to 4 surgeries in the same place) creates a DEEP crevice right down the middle of my stomach. When I apply my pouch I have to "fold down" part of it into the crevice and try to get it to stick. Occasionally it will start to lift and I will tape it down to get another day or so wear out of that pouch - if it starts to lift off closer to my stoma I removed the pouch and put another one on.

The square flat package with a flap sticking up is a version of this ring just a different brand. I was trying a different brand so that is how it got in the picture. I typically use the one I linked to. This is a mouldable ring that you can manipulate much like silly putty - but it is sticky. So, if I have a little divet somewhere I can tear off a piece and shape it to fit in that divet so that when I apply my pouch the surface is all the same level. I often times will put 1/4 of a ring where my crevice starts to try and get some extra time before I have to tape stuff down. Many people put these rings right around their stomas as an added barrier to the output. Sometimes output can get underneath the adhesive wafer and creep onto your skin- with the use of this ring there is more protection against that.

Next, spray bottle of wound cleanser. It is what it is, a wound cleanser. I use this when I remove my pouch to get off any adhesive residue and give everything in the peristomal a good wipe down before I take a shower.

Then there is my pouch the Coloplast Assura 1 piece with convexity. LOVE. I went through I couldn't tell you how many different pouches by different manufacturers - and NOTHING has worked as well for me as this one. My nurse likes to joke that I have tried all 211 pouches in the supply catalog through our insurance company. Not ALL of them, but most. Recently I received a shipment of pouches from a company in Germany - I haven't tried them yet because they look like I may have a problem with the size of the adhesive barrier due to my crevice. I will hold on to them though because ya never know when you may need to change things up! Anyway, convexity means that the adhesive barrier has a convex shape. This helps my stoma to "stand up" more. She tends to be a little lazy and shy, she (Stella) likes to dip down for some reason which was enabling output to get under my adhesive wafer. With the convexity it is much more difficult for this to happen, especially in conjunction with the other things I use.

Next up is something that you probably won't find in many other ostomates "set up". It is Protopic ointment that is used to fight the pyoderma.

Then the silver tube is Stomahesive paste. I am in LOVE with this product. I have tried other brands and none of them work for me the way this one does. When I first got my ostomy my nurse swore by the paste and always used it on my in the hospital. Well, she made a believer out of me. I use it around the ring on the adhesive barrier so that when I apply my pouch the paste fills in any gaps around my stoma and actually "turtlenecks" up the sides of it almost making a little wall all the way around. This, just like the mouldable rings, helps keep output from getting under the barrier and onto your skin. I have also learned that people who are a little more fluffy in the middle use this to fill in any creases in their skin before applying their pouch - much like you can do with the mouldable wafer.

Moving on there is a stack of gauze pads. Exciting. I use them to wipe away things I don't want on my skin and I will also saturate them with the wound cleanser and wipe around the peristomal area.

The two tiny square packets (that look like towlettes for eating ribs LOL!) are an adhesive remover wipe and another skin barrier. The adhesive remover is just a rectangle of gauze that has been soaked in some solution that helps break the seal of the adhesive to my skin so that the pouch is easier to remove. The skin barrier is a little square of foam that is saturated with a solution of no sting protection for the skin - again it leaves the skin a bit sticky while protecting it from the harshness of the adhesive on the pouch.

So, there you have it! Whew - I canNOT wait until all these skin things are cleared up so all I have to get out is my pouch, adhesive remover, skin barrier and wound cleanser.

And my process - I use the adhesive remover to break the seal of the barrier to my skin. I run it just under the outside edge all the way around working my way inward towards my stoma. Once I have the pouch off I wipe around the stome with a dry gauze to get off as much excess of the remover as I can. Then I use the wound cleanser to clean the peristomal skin and the pyoderma. I shower everytime I change my pouch. Even if I took a shower in the morning before work and then come home and for some reason need to change - I take a shower again. Anytime I get a chance to shower "naked" I take it! In case you are wondering - yes, I shower on non-change days too! They are waterproof :)

So, I've showered and I'm ready to get my new pouch on. I prefer to do my changes in the morning because that is when my stoma is least active. Meaning, there isn't much output because overnight is the longest period of time I go without eating. If I haven't eaten there isnt' anything to get rid of - so perfect time to take it all off! I take a couple of the gauze squares and pat dry around the peristomal skin. I try not to wipe because it can irritate the skin even more than it is already irritated. It then put a dry gauze right on top of the pyoderma so get it as dry as possible so that when I apply the ointment it sticks instead of sliding all over the place. So, I've put my Protopic on the pyoderma and I need to seal that - adhesive isn't so good at sticking to something with a vaseline viscosity. So, I put a dusting of the Stoma powder on top of the Protopic and use my blow dryer on cool-low setting to get rid of any excess. Here comes the magic

Remember how I said the powder didn't really work for me in helping things to stick - it actually PREVENTED them from sticking? Well, my nurse taught me how to make a "crust" out of the powder using the skin barrier. I take my skin barrier and lightly dab it onto the powder area - NOT saturating it just getting it moist. Then I take the blow dryer again on cool-low and let that dry really well until it forms a crust, man made scab, whatever you want to call it LOL! I use the rest of that same skin barrier for peristomal skin. While I give that a chance to dry/get sticky I put a ring of the stomahesive paste around the opening on my pouch. While I wait for that to set (just a few seconds) I spray my skin with the skin barrier spray - you can never have too much help in the sticking department! Then I use part of that moudable ring to make a more secure seal down in my "crevice". Once all of that is on I center the opening of the pouch over my stoma and stick it on!

Once it is on I keep my hand over the whole thing for heat and pressure to make sure the paste gets spread into any nooks and crannies and to make sure the rest of the adhesive barrier comes in contact with all of my skin and creates a nice seal. I will also take my hair dryer on the warm-low setting and just move it all around the adhesive to really get it to stick!

How often do I change my pouch? As needed right now. The longest I can get anything to stay on is about 48 hours - which is NOT the norm. Most people I have encountered can get 3-5 days. Some even go 7.

How often is it cleaned? I assume this means how often is the pouch cleaned? Well, I empty my pouch whenever I have to potty pretty much. It is dependent on what I have eaten as well. I can always count on needing to hit the bathroom around 1030 because that is when my morning coffee has zipped it's way through my system. If I eat things like applesauce, bananas or rice it slows things down. For the most part it takes things about 4 hours from the time I eat them to the time I empty them.

Are the pouches re-usable, can you clean or wash them? There are some people who do "rinse" their pouches when they empty them. For a 1 piece system like I use it is difficult to re-use because once you break that adhesive seal it cannot be formed again. However, there are 2 piece systems where the adhesive barrier is applied and then you can attach a pouch to that barrier.

The small square with the hole is the "baseplate" that has an adhesive backing which you apply to the skin. Then the pouch has the opening on the back and that opening connects to the ring on the baseplate. Some 2 pieces attach with a foam adhesive, other's snap like tupperware containers and some have a click n' lock mechanism. I have heard of people re-using pouches when they use a 2 piece system. You can remove the pouch - clean it however you clean it - and then put it back on (changing or not changing the baseplate I suppose?) Typically people re-use pouches because they cannot afford their supplies or have inadequate insurance coverage. I am VERY blessed to have insurance that provides supplies for me as well as a wonderful nurse who is always willing to give me stuff off her shelf to try. I have used 2 piece systems and they are nice because you can use different sizes of pouches. For instance, I have a 2 piece system and one of the pouches is very small - called a mini - and the other is longer and has more capacity. I will wear the mini pouch during the day because it is more discreet under my clothing and then at night I will switch to the larger pouch so that I can sleep through the night without a bathroom break. Other reasons for a 2 piece might be for swimming or athletic events. My Coloplast pouch is in the "midi" category meaning it is between mini and regular. Did I mention that I love it?

So, there you have it. I answered a few questions, gave you a little insight into what it is like to be me in the morning, etc. I promise to continue the question answering in my next post so please - keep reading and keep asking questions!!

Another type of barrier ring (same purpose as the mouldable ring) though this one is supposed to provide convexity. It didn't work for me.

A different manufacturer 2 piece system.

The first pouch that I fell in love with. It doesn't have convexity though so we had to break up.