Fart in a Bottle

Kim has been in town for the past week and she leaves to go home tomorrow. I wish we had more time to spend together. At dinner tonight with my family, I reminisced about the meltdown I had the last time she was in town and how far I have come since then. During Kim's last visit, I was just about a month into recovery from my first surgery. When she hugged me before she left to go to the airport, I lost it. I sobbed about how overwhelmed I felt with the stoma and ostomy. I cried because recovery was hard and it sucked. Tears also found my face-cheeks because I knew I was going to miss her. I was a mess. I felt defeated even though surgery went better than expected.

My family was shocked to learn that I had been overwhelmed and emotional about the surgery and ostomy. Is that a testament to my ability to keep things bottled up?  They couldn't have known I struggled coping with my new reality if I didn't tell them. For having uncontrollable bowels at times, I sure know how to keep shit to myself. My instincts were to avoid feelings, bury them, and hope they went away. For the most part, it worked. My emotional maturity is questionable. I don't know what it was about that moment with Kim that cracked the bottle with the things. Once she left, I collected myself and put the things back in the proverbial bottle.

I hugged Kim goodbye tonight and I didn't have a meltdown. There weren't any feelings I was suppressing either. I am a lot stronger emotionally and physically than I was a few months ago. I can't wait to see her in August!!!

I think if I trapped a fart in a bottle and I left it in there long enough, eventually it would not stink when I opened the bottle. I also think if I bottle up feelings long enough, eventually they will lose their potency when/if the bottle gets cracked. I could probably afford to get better at expressing myself. But then again, I think my "fart in a bottle" analogy is pretty fucking expressive. It could also be absolute bullshit.

My Ordinary Reality

If you endure something long enough, it will slowly become your new normal. This post is about my new normal. The forthcoming sentences and pictures have strangely become my ordinary reality during the past few months. It may be disgusting. I can't close my browser to stop being repulsed by my new reality though. I have to deal with this shit no matter how nauseating it is at times. It sucks, but I'm getting better at it.

My preferred way to empty the shit in my pouch into the toilet is to lift the toilet seat and get on my knees to get closer to the water line so that I decrease the amount of splash caused by dumping the shit into the toilet.  This is hard on my knees and troublesome when the floor is wet.  Before I got the ostomy, I would never touch a toilet seat outside of my house. I'm great at squatting and hovering. lol  Now, I find myself touching the toilet seat with my hand in every bathroom I use.  There is nothing neat about dumping the shit into the toilet. Even though I reduce splatter, I do not eliminate it. It is common for shitty toilet water to splash back up onto the toilet rim, my hands, arms, and/or clothes. I use wipes and/or toilet paper to clean the opening of my ostomy before rolling it to close it and sometimes my finger pokes a hole in the wipe/toilet paper causing my finger to make direct contact with shit.

I also come in direct contact with my shit on change days. Scarlett is almost always producing output while I change the ostomy appliance. I inevitably end up getting shit on me during the process. I recorded Scarlett shitting on me this morning, but due to technical difficulties I could not upload the video on here. You'll have to settle for pictures instead.

My stoma is now 7/8", which is just slightly smaller than a quarter.

I set out my ostomy supplies to prepare for change day. 

Oh no, Scarlett is about to blow!

She always thinks it's a good time to shit when she's free. She's a non-stop asshole like that. I'm 30 years old and still shitting myself regularly.  

The feeling of victory when she behaves long enough for me to clean and dry the area, and prepare and apply the adhesive parts of the appliance.

Bring it on, Crohn's Just kidding, please leave me alone.

This photo shows that I am okay. I am making it through this. I am pretty fucking amazing!

Scarlett

The anticipation of surgery is over. The results are in and it turned out better than expected. It wasn't an open surgery, it was laparoscopic. The ileostomy is not permanent, it's temporary and it will hopefully be taken down by early March. I went back to work on January 3, 2018 after being off for only five weeks. Since being discharged from the hospital, the pain has been manageable without pain meds. Everything seemed to fall into place and the best case scenarios prevailed. Even though things have been going better than expected, it doesn't mean that it's been easy.

It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?

People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.

I have this unexplained, constant fear.  I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.

I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind.  At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.

Barrier Opening. I cut in between the 1" and 1 1/4". This

is the side that sticks to the barrier ring and my skin.

Barrier Opening. This is the side Scarlett peeks through

on and also the side the two piece drainable pouch

connects to.

Now that I know the size of my stoma is slightly over one inch, I cut the barrier opening before removing the bag because Scarlett is an asshole and she can't be trusted in the open. I use skin protective spray and wipes on my skin around Scarlett and as it dries I make sure the barrier opening is cut to the right size making necessary minor adjustments. Next, I open the ring barrier protector (super sticky ring shaped thing that goes around my stoma first), cut it, and stretch it so that it will fit around my stoma. 

Ring Barrier Protector. This is the first thing that

goes on my skin around my stoma.

Cutting it was not advised by most of my nurses, but it allows me to get a perfect fit around my stoma by overlapping a bit of it. Otherwise, it's easy to overstretch the ring and then it won't fit correctly. I do make sure to overlap it at the top and not the bottom since shit is not immune to gravity. I figured if the overlap crack is at the top it will be less likely to leak.  Once the ring barrier protector is around the stoma, I put the barrier opening of the two piece appliance on top by peeling a few layers to reveal the adhesive and putting Scarlett through the hole I previously cut.

After the barrier opening is in place, I connect the drainable pouch. The plastic ring on the bag (drainable pouch) in the picture to the left connects to the barrier opening. The bottom of the bag is rolled up three times and held in place with Velcro as shown in the photo on the right. Once the bag fills with shit, I use the Velcro opening to empty it into the toilet (more on that in an upcoming post). The bags the hospital provided were clear. I hated being able to see my shit through the bag, so I'm glad my prescription bags are opaque. An ostomy is actually considered to be a prosthetic.

Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.

My belly definitely looks different than it did before. It's been tough, but I've been tougher!

The Day Before Surgery

I have plenty of time on my hands, so I am going to start from the beginning

My parents and I made our way down to the Cleveland Clinic for my stoma marking appointment at 1pm on Tuesday, November 28, 2017. Little did I know that I would not be alone again for two weeks. One of my Team Challenge friends gave me an ostomy bag to wear on the trip down so that I could have a better idea of where to guide the nurse to make the marks. Before my appointment, we stopped at Chick-fil-a. Even though I was on a clear liquid diet, my parents wanted me to come inside and sit with them as they ate lunch. Since we were just getting started, I didn't want to rock the boat. I sat there and watched them eat while I sipped on some water. Whatever, as long as they are comforted during this difficult time.

I took off the ostomy pouch I was wearing after they ate lunch. Although it felt weird, it was a good reality check for me to literally visualize it on me. Once we arrived at the Cleveland Clinic, my parents took a seat in the waiting room while I checked-in. After checking-in, my mom inquired if I wanted them to come back with me. I shook my head because I wanted to tackle the appointment by myself. Soon, I found myself in a patient room with two ostomy nurses. One nurse typed in notes on the computer as the other nurse placed both thumbs on my hips and both index fingers at a diagonal on both sides of my belly button. These were the spots we marked for the stoma. My left side would be for a possible colostomy (from large intestine) and my right side would be for a possible ileostomy (from small intestine).

My belly does not look like this anymore.

I thought I would get to give more input about the location of the marks, but according to the nurse my belly was a textbook mark since it was flat with no creases. If the marks had interfered with my pant line, we would have had a discussion. Honestly, the one mark was almost exactly where I had placed the practice one on my trip down, so I felt okay about it. The one nurse had me stand in front of the mirror and lift my shirt. She then proceeded to hold an ostomy pouch at one mark and then switched to hold it at the other mark. She didn't know I had already visualized it and she seemed shocked about my calm acceptance of it. The nurses let me know that if I end up with an ostomy, they will be visiting me in the hospital after surgery. Okay, I hope I never see you again.

We checked-in at the hotel and I started my laxative preps. I also tried to take a nap. My mind was racing and the maid was vacuuming what must have been the biggest fucking room next to ours because the vacuum just kept going and going. I couldn't sleep. Taylor arrived at dinner time and my parents went out to eat while she stayed with me. I was in the middle of my second round of laxatives, but we found time to open the gifts she brought me and have a pillow fight! To my surprise, the laxatives actually worked! It was a lot easier than both of the preps I did for my colonoscopy. I was up going to the bathroom multiple times throughout the night. I wanted to lie in bed and cry, but I couldn't cry with my parents and Taylor in the room. I couldn't even bring myself to cry in the bathroom by myself because I knew they were all in the other room. I held it together and that was that.

This chorus:
https://youtu.be/HzTot2OZI0s