PSA: Handicap bathrooms are usually for, you know, handicap people

I'm generally cool with a mother with a young child that has to go but as for my mom, she'd drag anyone that is not handicap out of that special bathroom by their hair and accept assault charges from the police. Fortunately that has never actually happened. I'll admit it is rather annoying when someone that seems perfectly healthy takes over a handicap bathroom and I'm forced to wait with a medical emergency. Then again, even my health issues are usually invisible or well covered up so who's to say the other person has hidden health issues too? That is why I am typically more laid back and forgiving than my mom when it comes to the handicap bathroom. I tend to give people the benefit of the doubt, that is, if my ileostomy bag isn't about to burst, but I'll get to that in a second.

Anyway, to set politics aside, I got to see Mary Poppins Returns tonight. It was awesome! I highly recommend it. You may even see an old star or so make a cameo in this fantastic sequel. 😉

After the movie, my poor ileostomy bag got super full. I mean to the point I couldn't even bend my leg anymore. Man, oh man, I hate doing the pathetic hobble waddle to the bathroom but desperate times calls for desperate measures. As soon as the credits rolled, I told my mom I'd meet her outside the bathroom. I hobbled out of the theater, remembered the handicap bathroom is literally right next to the theater we were in, then made a beeline for it. This is the kind of bathroom where it is completely separate from the general public restroom. It's one of those individual bathrooms with a sign on the door indicating it's for handicap and generally unisex. At some places, it's called a family bathroom. I saw a couple of girls about my age about to touch the door handle for this bathroom. I shouted, "MEDICAL EMERGENCY! MOVE IT PLEASE!" The girls took one look at me then walked away.

With great relief I waddled to the door then it opened. A middle-aged man, whom I'd like to think was actually a janitor of sorts, exited the special bathroom. We did an awkward shuffle where he squeezed through the doorway as I attempted to be a ninja and slide past him but my full bag made me limp and bump into him instead. I did my business then went to where the general restrooms were located. 

That's when I noticed that particular restroom facility was actually temporarily closed for maintenance. Seeing the yellow tape made me all the more grateful I chose the handicap bathroom when I did. There was no way I would have been able to hobble all the way to the other side of the very large movie theater to the other set of public restrooms. I would have been in some deep doo doo by then, pun very much intended.

Oh hey! I bet you're wondering why there is such a long gap between this post and the last post. Well, I've gone through quite a bit. Introduced a couple of new members to my slew of medical contraptions, worked on kidney transplant stuff, started dialysis, and so on. All those things will most likely be in my next post.

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.

My Dear Phyllis

Another reason why I decided to just go through with this blog is because my left kidney is on its way out and a few friends have told me that writing can be a great way to cope with the upcoming trials. My right one got removed when I was six years old because it caused a lot of infections and was quite small and puny. The surgeon initially went in to just repair the ureters but once they saw how bad my right kidney really looked, they snipped it out. For about three straight years I used to sit on Santa's lap around Christmastime and asked for a new kidney. Poor guy was speechless.

Me: Hi Santa!!
Santa: Ho! Ho! Ho! What would you like for Christmas?
Me:A puppy, a dollhouse, a new kidney, a Sonic video game but not just any Sonic game it must be the third one with Knuckles!
Santa: Wait, what?
Me: Sonic Three!
Santa: No, not that, a new what?
Me: Oh, a kidney! I would like a new kidney please.
Santa: ..... Here's a lollipop! Now, smile for the camera!

My parents then taught me about the waitlist. The incredibly long, loooong waitlist for a new kidney. I asked them if I could get on it. They said I still had one good one. My left kidney. I finally have a name for her. My left kidney's name is Phyllis and that's how I shall refer to her from this point on.

Phyllis began to shut down back in 2008, right after my last bowel surgery. The surgeons removed 14 inches and tapered 12 inches. When I woke up from that surgery, I shouted, "I can't feel myself peeeee!" I was so looped out on pain medications and nauseated that I kept my eyes firmly shut so I wouldn't projectile vomit on everyone within five feet of me. Someone slipped one of those bedpans underneath me. I relieved myself but I was still worried about the lack of sensation. Turns out bladder damage was considered a surgical risk and I already agreed that if anything were to happen then it was not anyone's fault so there wasn't anything I could do except to just deal with it. My post-surgery stay lasted for ten days. I should have stayed longer but I was determined to make it to my first day of 12th grade! Mostly because I am extremely shy and hate to ask people on the very first day to please move so I could claim the front and center seat in each class. I am hard of hearing and need glasses to see, so, yeah, being close to the teacher and the board is extremely helpful to me. I was in total agony in the hospital. I thought maybe it was just my guts recovering from the major surgery. Then I went into the bathroom and peed on the tenth day. I looked in the bowl and saw blood. Lots of it. It made me nauseous. Quickly, I flushed away the horrible sight and rejoined my loved ones.

I told the doctor I was definitely ready to be discharged. He gave me this look that pretty much said, "Bull. You are still extremely sick but since you are a stubborn girl I'll let you learn the hard way just this once." He signed off the discharge papers, I went home, stayed on the couch for three solid days, then went to school in a wheelchair because I was no longer able to walk from the pain and nausea.  But hey, at least I could finally feel myself pee again! My mom knew I was very sick. She did everything she could to convince me to stay home, even go straight to the hospital instead of school. When we got to my campus, she got me into my chair. I was about to wheel myself off to my first class when she insisted on pushing me. I shrunk in my seat as she took me to the nurse's office. I begged her that it was not necessary. I knew where my class was but she wanted to let the nurse know I just got out of the hospital. This school nurse knew me quite well because of my constant bowel obstructions in previous years. I saw the school nurse at least once a week, perhaps even daily. After my mom and I met with her, my mom then insisted on taking me to my first class. As a teenager, almost an adult, this was very humiliating to me. She even walked me in front of the entire class and got me all set up. Under any other circumstance, I would have been grateful. But at that time I just wanted her out immediately. I was too petrified to use my voice. She gave me my notebook and a pencil. I looked at the question at the board. It must have been something extremely simple in that English class such as "What did you do this summer? Please explain in at least half a page." But I couldn't read it. All I read was "What did yo..." I couldn't focus. I turned my head to look at my other classmates. Suddenly I felt nauseas again. Since I did not want a custodian to come in and mop up my puke on the very first day, I rose my hand and asked to be taken to the nurse's office. Yup. I couldn't last one hour at school. Later that day I was in the hospital with a creatine of 6.7. The doctors talked about dialysis. Somehow, over the next ten days, my kidney actually got better. The creatine dropped to 1.8. I dodged dialysis.

As the years progressed, my kidney's health began to decline once more. It is more like a rollercoaster than anything else. Phyllis has her good days and her bad days. Still, the possibility of dialysis is getting pretty close. My kidney doctor, the nephrologist, has finally deemed me ready to start my epic quest towards getting on the waitlist for a new kidney! I am currently in the evaluation process. I started at one hospital last November but they turned me away because I am too complex for them. I need more than just a transplant to make this whole thing work because of my other health conditions. Just because one hospital said no did not mean I was going to be on dialysis for life. I continued my search. I have found another hospital. For now, I'll keep the hospital private but if anyone wants to know, just leave a comment and I will find a way to email you. This place is pretty great. They are very versatile and have taken on lots of other VACTERL patients. So, these folks know what's up. They understand that one condition affects another and need to be careful with whatever medications they might give me or whatever treatment they put me through. They can give me a new kidney and quite possibly repair my bladder!

The hospital has agreed to start the evaluation back in August of this year. They gave me a list of eleven different procedures and blood labs to complete before I can resume the evaluation process to even be considered to get on the waitlist. Since I only need to see a urologist surgeon to evaluate my bladder, I am pretty much done with the list. I even already have a possible donor waiting! However, it is still going to be a very long process. Several doctors have told me that with my set of conditions, it is best to get a new kidney before dialysis because once I am on dialysis my body may not be strong enough to withstand a transplant surgery. My last hospital visit was on October 7th and I got extremely close to dialysis once more (creatine hit 5.3) but I dodged the bullet once more. So, no pressure, right?

There you have it, now you all have been introduced to my ileostomy and Phyllis. These two play a huge part of my medical life.

Until next time! Here is another funny comic:

The Grand Reveal

Hello! So, I have recently decided to become a little more open about my health. Most of my friends and family probably assumed I have already been pretty open especially since I often talk about my left kidney gradually failing on me or the fact that I used to have tons of bowel obstructions growing up. But still, I always kept one fact tightly under wraps because I was afraid of people judging me the wrong way. As a kid, I had one little accident and I figured from that moment on a few classmates thought I was gross and weird because of that accident. I chose not to tell most people outside of my family about this part of my health until this year. One day, I revealed it to one friend as they drove me home from a church activity. I do not recall exactly how the conversation went but it was along these lines:

Me: I wish I can just get out there and date without any worries. But there's...something... that holds me back when I really like anyone..
Friend: What do you mean?
Me: Um.. I have no large intestines.
Friend: And?
Me: I have an ileostomy.
Friend: Your point?
Me: It's a poop bag. Nobody will like me once he finds out I have a poop bag.
Friend: People don't really mind.

I was surprised with my friend's reaction to the news. Turns out people are actually a lot more accepting as adults. Imagine that. Well, most are, there's still some groups that are against certain things but we won't go into that here. I tested this theory with yet another friend, who happened to be studying to be a dietician at the time. I was trying my hand at the renal diet for the first time back around April of this year and it was driving me absolutely nuts! I was with a friend at this one place called The Institute of Religion (a building owned by my faith where people can learn from the Bible, work on their college studies in a cool library, take naps on one of the many couches, and even make food for themselves in a kitchen). As I unpacked my food, this is how the conversation went:

Friend: Okay, let's see what you brought this time. Did you get some fresh fruit this time?
Me: Yup. But this whole thing is so hard to manage! Especially since everything goes through me so fast... Considering the fact that I have no large intestines.
Friend: Wait, how do you poop??
Me (taken-aback): Um.. I have an.. ileostomy?
Friend: Cool!

I think at that point my friendship with this person just grew stronger just by talking about poop. Folks! If you want to create everlasting friendships, talk about poop!

With that said, I have gradually told a couple of more friends over the following months. Another friend wasn't surprised. "I had a feeling you had one." She saw me adjust my bag underneath my pants at one point and she also happens to be a nurse. Normally I keep my bag pretty well concealed so I guess only those with a trained eye actually notice it. Then a few volunteers and nurses in the hospital have encouraged me to create a blog where I may impart some wisdom about having an ileostomy and all the adventures I have had related to it in one way or another. I did a lot of deep thinking and research. I was hesitant at first because I felt like there were already plenty of other fantastic ostomy blogs and I also wanted to reveal this part of my condition to a few more friends in person first.

Then one day I read 1 Corinthians 12. It talks about arms, legs, eyes, all that stuff that we humans love and cherish. Verse 18 reads, "But now hath God set the members every one of them in the body, as it hath pleased him." In other words, even though there may already be lots of ostomy blogs out there, each person still has their own perspective in having an ostomy. Who knows, maybe there might be some reader (hi reader!) who is up late at night, feeling pretty frazzled, and just wants a nice, curse-free, informative, and upbeat blog about having an ostomy so they can manage their new life with one.

Stay tuned for my next post! Here is a funny comic to tie you over for now.



Comic credit goes to The Awkward Yeti. My large intestines and portions of small intestines weren't removed because of constipation but it's pretty similar.