Prologue

Part 1

Part 2

Thereafter

This is the other ten or so days after my initial discharge and re-admittance in the ER, the whole trip meant to only be four days but there I was.

The first two or so days back in the hospital went by in a combination of utter despair, sleeping, and a drug-induced fugue, pain meds around the clock every four hours. With the NG Tube, I couldn’t drink water, eat; it hurt to talk and breathe; the pills I had to take orally most of the time would get stuck on the tube. The dry mouth was insane, dehydration a close second.

I was beyond miserable, the will to live below zero. I didn’t want to do anything. Not read or write or look at my phone or watch TV or be awake. Only wanted to stare into the void and sleep. I was a husk, shell; a living failure; a shitty imitation of who I was prior to this all. 

You could ask anyone who knows me, I literally always want to be writing, always. I choose it over anything else, importance right below my wife. Every available moment I had was usually spent writing or working on writing-adjacent things.

Sometimes I could go without reading for a couple days—life happens—and scrolling on my phone is just a bad habit I’ve self-contained mostly to meal times to slow down eating. I don’t watch TV except with my wife or movie nights with buddies, but I wrote every-damn-day for at least a decade and never once didn’t want to do it even when I hated doing it.

I write against death, words need put down before I can’t write them anymore; stories need fucking told. So, for me not to want to write, was very bad.

Those days melded together, forming into a somber stream of anhedonia, yet tedious and daunting. Groundhog’s Day.

4:30AM Blood draw

5:30AM-6:30AM Surgeon’s Fellow visit

7AM-8AM Vitals check

8AM-9AM My wife arrives

10AM-11AM Morning meds/painkillers

11AM-3PM Sleep, Physician’s Assistance visit (more helpful than Fellow), and vitals check

3PM-9PM Pain meds and sleep

10PM-11PM Night meds and sleep

A few X-rays were thrown in there and a few short walks (forced by my wife, bless her beautiful soul) around the floor, but that was mostly the gist.

It was gleaned by the medical staff throughout this that the ileus was possibly not in my stomach but mainly my short bowel, so the NG Tube was approved to be taken out of me, which was a heaven-sent. That was the worst thing out of everything. I’d get cath’d three times over instead of having that damn thing inside me for another hour. It hurt my throat, made my nose bleed, caused my dry mouth to be so much worse to the point my taste was screwed for days afterwards.

The next couple days weren’t great, but I did stop taking pain meds because they slow down digestion. I couldn’t handle water, despite all the motility medications they were giving me to jump-start my gut and all the forced-walks my beautiful wife had me do each day. Just a few sips of water here and there, towing a dangerous line of extreme pain/distention or staying my-little-dehydrated-self. If it wasn’t for the constant round of IV fluids, surely I would’ve died from dehydration. 

Family visited which was nice in spite of being in terrible shape and mood, my anhedonia still prevalent. Once they left I tried to take a nap. 

Randomly, I finally met my surgeon for the first time since my intake appointment. It was like a David Lynch movie. Mid-nap, I woke up to him and his team (his PA, Fellow, and some other doctor) walking through the closed curtain. They stood over my bed like looming giants staring down upon me indifferently. I felt tiny, curled in the hospital bed under the blanket I brought from home.

He spoke to me as though I had been at home living with my ileostomy for days now, like I hadn’t been in the damn hospital for a week by this point. How had I been? How was the bag? Did I have any troubles yet? No mention of the failed discharge or the ER readmission or anything. I did the small-talk, “Yeah” and “It’s fine/good” and nodded at whatever he said but couldn’t hear. 

Then once that ran its course, the conversation died. 

It became dead silent for at least thirty seconds. I looked at him, he looked at me; I looked at the others, they all shared glances, then back to me. It was as if I was meant to lead the discussion, like I knew what was fucking going on. 

Then, like time suddenly snapping back to movement, he mumbled his goodbye and they exited stage left. It took a minute to realize that actually happened and it wasn’t some fever dream. Eventually I went back to sleep.

Afterwards, we had a stoma nurse come in to see if she could help, because if I couldn’t get anything down in the next day or two, they were looking to put the NG Tube back in me. I’d do literally anything for that not to happen.

She was wonderful, very likeable, seemed to actually care about my issue and me. She irrigated the stoma and managed to get out well over 2000+ ml of bile sitting me. Also doing this helped promote bowel contractions, poking the sleeping bear in the hopes it’ll wake the fuck up. But even with that, I was still boated but the pain was considerably less. There was still more bile where the cath couldn’t reach. But, it was the first thing that truly helped the issue and not treat the pain.

Suspiciously, next morning I could drink some water. Not a satisfying gulp, but more sips than I could before. It tasted like freedom, like my flesh prison was becoming a flesh home, entrails a comforting scarf coiled within my abdomen and not chicken wire shoved in there for no other purpose but to get it out of the damn way.

But, the surgeon’s Fellow at 5:30AM made an off-hand remark that maybe I had a global stomach problem, gut-to-rectum, that the surgery wouldn’t fix the issue. She didn’t follow up this bombshell with anything encouraging or any comforting words that would relieve the crisis now blowing up inside my head.

My wife had to talk to me down from the ledge, but when a Physician from my surgeon’s team visited later (first time seeing him since surgery, former, not latter), he also mentioned this “global gut problem,” too (I knew my surgeon’s team had a group chat, so he was thinking aloud, spitting out what surely the Fellow had said earlier that day). That threw my wife into crisis mode, too, and me even more so.

Then, he left the room without giving us any hope and the potential future of me being permanently on IV and soon Nutritional IV, unable to eat or drink again.

Wasn’t that nice of them?

Either later that day or next, I wanted the stoma nurse to come back, which she did. A shit-storm brewed in the background as there were student nurses, a regular nurse, my wife and I all in this cramped closet-sized room, medical staff talking and asking questions all the while my stoma was being aggregated. 

Unlike before, she couldn’t get the cath through the stoma as though a wall blocked it. We learned that I clench my muscles without knowing, including my intestinal muscles, body taut and prepared for some sort of unknown danger that likely would never come. She gave me an injection of Valium and that helped the muscle to relax, so much so she was able to get the cath through. Granted, there only was around 1000+ ml of bile in there, but anything getting the hell out of me was better than nothing.

With all that out of the way, she left.

Later, they ordered a CT scan and I had to drink thirty-two ounces of contrast. I hadn’t drunk thirty-two ounces of anything in well over a week and I drank all of it without throwing up or horrible pain. After the CT, I still sipped water a little more but stopped myself just in-case of stepping over the line that seemingly had been moved farther away, location still entirely unknown to me.

Like a snowball effect things quickly improved. I woke up the following day with more energy than I had before and I could tolerate more water. I took a walk by myself around the floor and wasn’t exhausted. I still wasn’t putting out actual output besides bile thanks to no food, but regardless, it was moving. By late afternoon, everything was going good, I no longer needed pain meds, so my amazing wife and I decided to reintroduce clear liquids.

The first thing I drank was cranberry apple juice and it tasted better than anything else I’ve ever tasted before. It had to have tasted like the apple Eve had plucked from the tree in Eden, like the first man discovering the taste of honeycomb, like what Icarus felt when he thought he would reach the sun before it melted his wings. If it had been any other time in my life, the juice would’ve been average at best, but then…

I don’t recall if I tried my luck after that, taking the win for what it was and ending the night with probably more juice and water.

I kept to clears the entirety of the following day. I managed to get more walks in, too. Energy was on the rise and I felt close to normal. I still had an IV drip and was taking motility meds, but my body felt good. I drank chicken broth, juice, water, and ate cream of wheat (apparently considered a clear liquid?) for dinner.

I was on the up-and-up and now that I was functioning, I yearned to get the hell out of the hospital and get back home. I was done with that place and the whole trip. But I kept reminding myself several times I wasn’t out of the woods, that this takes time, that if I push for early discharge (like the doctors actually tried to do before I could even tolerate water) the possibility of being back in the ER was high.

Patience was priority, unfortunately.

Full liquids were next: orange juice, coffee, Ensure, milk, etc. I tolerated them all, although I was getting sick of the sweets. Most of the full and clears are sugary like fruit juices, puddings, Jell-o, Gatorade, etc. Anything unlike that was basically broth. Greek yogurt was on the list and I tried that since I used to enjoy it, but that didn’t turn out well, lots of bloating and stomach pain/cramps. No amount of water or walks would abate it, unfortunately. They actually had to give me dilaudid to curb the pain.

Likely cause was the probiotic in it (I had eaten greek yogurt the day of the ER, too; then later when I was home tried a different brand to the same results. Greek yogurt may very well be something I’ll need to avoid). 

Either way, I was taking in things well enough, felt overall better, and it was looking like discharge was on the horizon. I was restless, to say the least.

My wife and I decided for me to slip into soft foods again. Also, since I was able to handle fluids, they took me off the IV except for when I needed antibiotics. The doctors wanted me to eat solids again, too, due to the crazy output of bile I was having. If I couldn’t get these two done, I would have to stay in the hospital more. These were the final test to be discharged, but I was scared as hell to eat solids again. Last time I ended up in the ER. I focused on not psyching myself, keeping my attention to how I felt in the present and not in the past.

Very small bites, eating slowly, chewing thoroughly—all those things I knew before became more paramount than before. I was terrified of coming back to the hospital, also of blockages.

I had watery, scrambled eggs. Those went well. Later, I had a small thing of corn flakes with fat free milk. That went good, too. For lunch I had half a banana with peanut butter on one slice of bread. I learned they slowed down my digestion; either in combination or one of them individually. Due to this, I was full three hours later and couldn’t eat anymore, even though I should be trying for three meals and two snacks a day (which seems impossible even now at home). It’s a hard rule not to push if you feel full/distended with an ileostomy.

By around 7PM, I felt okay and ordered dinner: a slab of turkey with rice. Both were okay and didn’t seem to cause pain that night.

The next day I told the Fellow I was ready for discharge and that got the ball rolling. I think for breakfast I had eggs again (a staple in my diet) and a slice of moist toast. They forgot my Rice Krispies, but the nurse had them on hand and gave me one with fat free milk, too.

The hours waiting for morning meds, talking to the Physicians Assistant, the case manager, etc. felt far longer than it was. My wife and I were more than ready to leave. It was like there was an inner me that was thrashing to get out of my body, demanding blissful freedom from the sterile cage it had been in for almost two weeks. 

By around 11AM I was finally in my regular clothes, had all my shit together, and we were taking the elevator to the lobby finally. I hadn’t had “real coffee” in a while and while we waited for our Panera order, déjà vu washed over me. We had done almost the same exact thing the first time I had been discharged. 

It was surreal in a way and in the back of my mind I had the inkling that this could turn out like the last, that I had an ileus again (even though it was moving, so that was untrue) and I’d return to the ER in ten hours and repeat the previous days over again, that somehow I was trapped within a vicious cycle of being teased with freedom but truly never escaping Hospital Hell.

Bless the gods, that didn’t happen.

We got our order, took the shuttle to the hotel, and hung out the rest of the day, continuing to binge Law & Order and little-by-little pack up everything to go home tomorrow.

There was a hiccup because I randomly felt full and there wasn’t any output. We were afraid that my prior fears had come true, that another ileus had come. After walking a few miles up-and-down the halls, doing some stretches/movements, nothing changed. But when I ate a small thing of Rice Krispies, things started moving. So, we learned then that we shouldn’t jump to conclusions and for my bowels to still function, I had to just eat.

After all that was done, we went to bed. It was weird to sleep in a normal bed again, what little sleep I did get that night, but it was great to be beside my beautiful wife once more. 

The next morning I woke up at my usual early time, around 4AM-5AM, and for the first time got some work done. I’m still behind on writing (I was meant to publish a new book this month, February, but that ain’t looking like the case) as well as writing-adjacent things, social media and the like, but I’m chipping away at everything.

After my wife woke up, we went down to the hotel restaurant for breakfast, then I uselessly watched my wife get everything onto a luggage cart and load the car. I’m not allowed to lift or move anything over eight pounds, so don’t think it was because I’m lazy. In our relationship, I’m typically the pick-up-and-set-down person.

And finally we went home.

The End(?)

I’ve been home for about five days as of this writing and it’s been okay thus far. Everything is trial and error, learning my digestive system all over again. Before the surgery I knew how it worked exactly, but now it’s like starting all over again. 

What’s been driving me mad the most is being unable to help around the house, especially with all the snow we’ve been getting here in Western PA. Since I can’t lift over a gallon of milk for six weeks, all but washing and drying dishes, vacuuming and mopping, and some other lightweight things is all I can do. Plus, without my day job, I feel very useless. If I can’t contribute chore-wise or financially (albeit I’m on short term disability, so I’m still making something), it’s like what the hell purpose do I serve?

So, lots of writing’s getting done, and I finally have time to play World of Warcraft and Dead by Daylight with my wife, which has been nice. I’ll have more reading time, too.

There’s nothing much left to say. This isn’t the end and I don’t think there ever will be. The battle with my bowels seemingly will go on forever ‘til the end of time, regardless of what shape it’s in or what’s there or not. It’s annoying but it’s not the worst that could happen. It’s just how it is—it’s life. Many people have it way worse off than I do, definitely when it comes to chronic conditions, too.

Anyway, thank you for reading all of this.

I hope I didn’t bore you too much.

Thank you so much for reading this part and/or the whole story!