You’re weird and you’re wonderful

On Monday I had my first meeting with my stoma (wocn) nurse. This is someone who, for me, specializes in maintenance of my ostomy bag. I had some general concerns and briefly gave her the background on my situation. “But you’re so young.” Yeah, I know.

I am extremely happy that I saw her, she was maybe more knowledgable than those at mayo, and much more friendly. She told me about the stoma support group in Lincoln. I told her my support group research has been focused on cancer support. “My bag is just a side note in my life now.”

Funny how that happens. When facing a ostomy bag as my biggest concern, ulcerative colitis support groups seemed silly. “How can I be bothered with something do trivial when I will have a bag hanging off my stomach? This is the worst, I’m going to loose six months of normal life, including my summer.”

Now I have to look at least a year out before I see any normalcy. My concerns and dread about an ostomy bag now seem irrelevant.

I realize now I’ve never fully embraced and recognized Bennie for the life changer he is. Yes, Bennie; I should not have been given my phone the night after surgery! The huge emphasis I placed on him and the idea he was the end solution prior to surgery was never met with any follow up or real acceptance, only that this is now just a small detail of my plan.

So here you go Bennie. Here’s your one post to shine before chemo becomes the biggest focus of all. I give you all “The highs and lows after getting an iliostomy bag.”

In order to move me from my gurney to my hospital bed, the obviously had to lift me. So, an hour or so after I was closed up, a machine slide across my room, dropped a series of hooks, and attached to he sides of a canvas under my sheets. It then lifted me up in a caccoon-like pouch, moved me four feet over, and laid me back down on my bed. All I could think about was the scene in Free Willy when they kidnap the whale out of the tank, and load him up on the truck.

Like any fluids leaving a body in the hospital, ostomy bag output is highly observed for consistency, color, and quantity. For those of you still lost, ostomy output is my poop. Because the complexity of handling the bag and trying to get it into their cup, and my lackadaisical attitude due to my drugs, I generally just let a nurse take care of it. I would urinate before they’d drain, and I’d also be too sore to stand up and put my underwear back on. It took probably two days to realize I might try to be a little more conservative, as nurse shifts change quite frequently. Nah, no shame at all. There are now probably 15+ people I rochester that have seen my lady parts.

My first walk. I didn’t go too far, maybe a couple rooms down and it hurt like hell. But I did it. Took one literal step toward recovery at a time with my yellow hospital socks.

The lowest of low. One of my initial walking attempts ended with me holding a barf bucket about ten steps out of my room. Dont worry, nothing came up – the pain of a single dry heave was enough for me to force everything to stay down. I compromised by trying to sit in a chair. The nausea got worse, and I wanted more than anything to be laying back in bed. I didn’t think I had enough energy to crawl in the bed only three feet away.

I finally did. And immediately lost control and passed my first bowl release since surgery. Very slowly. I asked the nurse what I should so. There wasn’t anything, it’s normal since I still had so many pain meds in my system.

So I had to shit my bed. Consciously. With two other people in the room.

Seriously probably the worst 20 minutes.

Leaving the hospital with my drain tube. It was just a pain to maneuver around with. It was hard to hide and gross to look at. It made me feel like a sick person.

Sweet potato fries and shrimp. My first legit multi-course meal. Although I attempted to eat in the hotel restaurant with mom, dad, Hannah and Liz, my nausea got the best of me. My food was sent up to my room where I devoured it all on my hotel bed with the room to myself. Bliss.

I realized at the hotel how easy stairs would for me while doing a quick lap around their outdoor area.

Completing my first total bag change by myself in the hotel. Empowered. I finally felt I could manage this.

Driving a car. It was like I was 16 again and begging my mom to let me drive us to the grocery store. Which also led to a similar feeling of independence when I hit the interstate alone.

My first serious bag leak. My emergency kit wasn’t complete and I was in Lincoln, so I jumped into my car at 6:45am on a Sunday as soon as I was awake and drove one-handed to Omaha. My other hand was holding a giant wad of paper towels to my stomach.

I arrived to find the house locked, garage pad dead, and storm doors unlock able. I had to get creative to get inside, this was an emergency!

The first time I got hit on after surgery. Such a simple compliment, and then I had to slink away to find a chair to sit down in.

I could keep going, but from much past here it’s all just become me. What follows isn’t because of Bennie, it’s just life now. Learning, adjusting, becoming more confident.


Author: Clarissa A.

The older I get, the less I know.

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