Everything But The Kitchen Sink

Well, sometimes it feels like I gotta pack that much anyway. I am sure there are people out there who have to pack way more medical supplies than I do. So, I should not complain too much about the amount of supplies I take with me during my travels. Trips can be interesting with an ileostomy bag. If I am going to stay anywhere for more than two days, it can be tricky but not impossible. There have been trips where I have felt like Mary Poppins. You know that one scene where she was in the kids' room and she unpacked all sorts of stuff including a bedroom lamp? That's how I feel sometimes.

"And for my next trick I shall manipulate you into cleaning your room through song!"

Okay. Here we go. There is this one trip that my church does each summer. We all carpool to the Colorado River which is about eight to ten hours away from home. Maybe a bit longer or shorter. I don't know. I usually either fall asleep or read a book about halfway there. We go to this little town called Big River. Two of the church families happen to own summer homes right by each other on the river. It is pretty awesome. They have boats, jet skis, tubing, you name it. Many would call it paradise. Not a single care in the world!

Except for me. I always gotta worry about my ileostomy bag. The thing actually stays on quite nicely. I can even go off the high dive at any swimming pool without breaking the seal attached to my skin. However, like most tape-like material, the stuff does eventually start to peel if I have not changed it in the past three to four days then I go swimming. Whenever I go into the water, I wear swim trunks over my single-piece swimsuit to cover up my bag. I still find it funny how nowadays, lots of girls wear swim trunks with their swimsuit. Granted, most aren't as big or baggy as mine are, but it is still a "two-piece" like mine. I may not know much about style but my mom did teach me how to match swim trunks with swimsuits so it would still look like it was meant to be.

It is nice how nobody has ever questioned why I wear swim trunks. Maybe some people have asked but I've forgotten. Chances are, I have probably just responded with something like, "I don't want anyone to see my surgeries." Which is actually true. This ileostomy bag really is the result of a surgery.

When it comes to going on the River Trip, I have a certain method, first of all, I change my bag about one to two days before the actual trip so my bag is still relatively new as I jump into the water. I try to be very discreet about my bag. Especially if I am going to be away from home for two days and I will be in the water most of the time. The more time I spend in the water, the sooner I must change my wafer. I believe I have gone on this river trip about three times now. I will admit, the seal has broken. Every. Single. Time. It seems to happen shortly after I go tubing at least once during the trip. I think it is probably because I have already spent so much time in the water that my bag is pretty much done after I go tubing.

So, how do I overcome a broken bag while practically out in the middle of nowhere? I simply break out my emergency kit that I always have hidden at the very bottom of my backpack. It contains a single box with two sets of bags, wafers, a tube of glue, adhesive powder, and scissors. I wrap this box with a Chux Pad then I cover that with a secondary Chux Pad. I tuck away a grocery bag and two giant trash bags next to my medical supplies. Finally, I cover everything with my usual clothes and other random accessories. That way, even if someone were to need anything, they would not even see the medical supplies. They would have to really, really dig through my clothes in order to reach that part of my backpack. Once I need the supplies, I know exactly how to maneuver through my pile of stuff and access everything that is required for the change.

I may want to be discreet but I also know when to ask for assistance. I usually seek out an older adult or two, usually the one who owns the house so they can help me find a bathroom where I can take over the shower for the next hour without raising any questions. The first time, I just told one adult supervisor then used the bathroom. This bathroom was split into two. First, there is the sink area. I locked that door. Then there is the toilet and shower area that has its own door. I kept that door open because I knew I had to lay down on the floor to do the procedure. I may be small but I most certainly did not have enough room to lay down in just the toilet and shower portion of the bathroom.

Here is my procedure at a glance:

1) Use scissors to make inner circle for wafer opening large enough for my stoma. 

Yup. The hole really needs to be that big.

2) Snap fresh bag onto newly cut wafer.

This is exactly how my appliance looks as it gets put on my body. No, there won't be any stoma shots. Modesty reasons. The clip has been attached in advance for this shot.

 3) Lay out tube of glue, adhesive powder, box of tissues, bag, and wafer on top of a Chux Pad. Blow dryer optional. 

4) Shower, remove old bag, save clip (these are hard to come by!), discard bag, clean up stoma. 

5) Get out of shower, lay on Chux Pad 

6) Dry stoma, apply about 1/8 inch of adhesive powder around the stoma, use tissue or blow dryer to spread powder about an inch wide around the stoma. Make it too wide then the outer portion of the wafer will not stick to the skin.  

7) Attach saved clip to end of fresh bag. 

8) Remove protective covering on inner circle part of wafer. Apply glue like you would with a bagel. Only apply about 1/2 inch of glue then close all the gaps around the open hole by lightly dabbing it. The glue is heat-activated so gotta work fast! 

9) Press wafer onto skin and firmly press down around the stoma to make sure there are no loose gaps. Press too hard or for too long then you mess up the glue. 

10) Remove outer protective covering for the wafer and flatten the tape-like fabric against the skin. Make sure there are no wrinkles. The more wrinkles there are, the shorter the lifespan of the new ileostomy bag before it lifts or "breaks." 

11) Stay still for about five to ten minutes to let the glue set. Now you are done!

Now, as for the actual procedure while on my first River Trip. I laid out both Chux Pads so my head wouldn't touch the floor. I know, I got that from my mom and Gramma. They are always worried about germs. I prepared the wafer. Then I snapped the bag onto the wafer with the bag pointing slightly sideways at an angle so that if it was on my body, it would point slightly to the right, towards the outer part of my body, thus giving me a little more leg room and I can actually bend forward a little more. I hate it when hospital nurses place the bag completely sideways when they change my appliance during a hospitalization. I know, I know, it's to make it easier for nurses to do bedside dumping (my family calls it dumping as they empty my bag) but the sideways deal still makes me feel uncomfortable when I walk around the hallways.

Back to the River Trip! Next, I laid out all my supplies. I brought out the first trash bag, the second trash bag was actually for dirty clothes, and finally I brought out the grocery bag. I closed the toilet seat, placed the grocery bag on the shower door, then showered. I removed the entire ileostomy appliance, placed it into the grocery bag hanging on the shower door then stuck it on top of the toilet seat. I have had this stoma for eight years now and I still can't get myself to touch the red bud without cringing. I don't feel anything. Nothing at all.. Or maybe I do. It is very hard for me to describe. Because it is my intestines. Of course I should not feel anything. But it was brought to the surface of my skin. So I should feel a little something. Anyway, I just don't like touching it. I guess that is a very good thing, considering the ileostomy is sort of like a butthole. Still, every once in awhile, I get this itch and-

Anyway, I digress. Back to my procedure. I used soap then I rinsed very good. I mean, extremely good. I had to make sure my skin was not slippery from the soap at all. Just in case anyone may be concerned about possibly touching a poop-covered bar of soap, let me reassure you with the fact that I actually also bring my own wash cloth and bar of soap. I use my own wash cloth to wash that area then I squeezed out as much water as possible and tucked into a ziploc baggy to take home to throw in with the rest of my laundry. As for the previous trip from this year, the owner of the house was kind enough to let me borrow their towels and wash cloth. Of course, I told her that it must be thrown into the laundry basket immediately. Nobody else was to use it.

I stepped out of the shower, picked up the clip, then carefully laid down without setting off the "volcano" effect. Sometimes I'm lucky. Other times... Not so much. During those other times, I usually have to step back in the shower, repeat the whole ileostomy washing process, then try again except I fold up the Chux Pad each time so I don't lay in my own fecal matter after just getting cleaned up. Oh, how I detest the "volcano" effect. I usually try to change the bag in the morning when I have not eaten anything yet, when my bowels are the least active, but sometimes these emergencies come up during the day and there is just no way around it.

Once I am down on the ground and my bowels are finally at peace for the time being, I quickly stick a tissue on top of the red bud to dry it. I do not touch the ileostomy. I do not apply any pressure. I want to say the ileostomy has the same level of sensitivity as a man's privates but I honestly do not know. I just avoid adding any pressure on it when it is exposed. Next, I toss the tissue into the wafer's packaging. The wafer's packaging makes a really great mini on-the-go trash bin just as long as I don't have to fill it with my "volcano" effect tissues in just fifteen seconds flat. I used a second tissue to dry the surrounding area around the stoma. I applied the powder around the stoma. Then I used a third tissue to lightly dust the powder so it flattens out about half an inch around the stoma.

I removed the white protective covering for the inner part of the wafer then put about half an inch of glue on that inner circle area. I lightly dab at the glue to flatten and spread it around like with a bagel. Ever seen me prepare a bagel? That is why I am so good at spreading cream cheese on a bagel. My apologies for ruining anyone's love for bagels. I made sure there are no gaps or openings in the circle of glue. This whole time I am working at top speed because I am working against a ticking time bomb and I have no idea when it is going to explode again. I have no control whatsoever with my small intestines. I can sense a slight inkling of when it is just around the corner but I cannot stop it. Okay, maybe I could, but that may have actually been one of the reasons why I kept getting so many bowel obstructions growing up. I used to force things to stay inside, thus stretching out my small intestines and quite possibly caused a lot of unnecessary blockages. Then again, there were many other factors at play too. Still, holding in anything is not good for the bowels. Period. Got something? Let it rip! In some cultures, a fart is actually a compliment towards another's cooking. Or is that a burp? Meh, it's still a gassy matter.

Once I'm done smoothing out the glue, I stick the wafer onto my skin. Usually, if there is enough powder, it does not hurt at all. But if I missed a spot, boy, I can probably qualify for a role in an opera performance with the notes I can hit! It can burn and sting pretty good. Fortunately, it only lasts for about five seconds then it fades away. I firmly press down the wafer with about five short taps without applying any pressure to the stoma. Finally, I remove the outer wafer protective cover, flatten the tape-like material against my skin, then just lay there for about five to ten minutes to let the glue properly set. Usually at this point I decide to stop swimming for the rest of the trip. I don't like to swim in the water with a brand new bag.

I tidied up the bathroom, cleaned up whatever mess was there. During that first time, I forgot to soak up all the excess water in front of the toilet after I made about three to four trips back into the shower. Oops. A girl complained later that day as several bunkmates were brushing their teeth. I was tempted to tell her, "At least there isn't a glistening trail of poo anymore. " But alas, she was not aware of my health and I was not ready to share that part with my fellow bunkmates just yet. I apologized, went in, and handled the situation. As for the trash bags. I sought out the adult advisor that I trusted to remain discreet and she helped me get the bag out of the house without being noticed.

There you have it. Somehow I always manage to keep it mostly discreet throughout the entire trip. Water trips typically mean I must bring the ileostomy kit with me. At least I don't have to worry about catheterizations. Now, that, is another tale.

Here is a lovely photo of my kit with brand names and all!

Bag, wafer, scissors, clip, tube of glue, adhesive powder, and box of tissues.

I don't carry it everywhere. Only on long trips. I will also start bringing it with me to all-day beach trips if there is a beach house nearby. My mom has always had an emergency kit at each of my schools from P-K to 12th grade. As for college, I just head straight home to change my appliance.