Poop in a bag: 1 year later

This week is the one year mark of my getting sick. Technically speaking, June 14th is the last day I “felt well”.

Thursday, June 14th was a company outing to a Tigers game; lots of beer, lots of food, revelry. Another beautiful day with great people. The day after, I didn’t feel so hot, so I took a half day at work, but chalked it up to hedonistic exuberance at the ball game. Saturday I was functional, but didn’t feel 100%; in fact I remember feeling “weird”, but unable to place why.

A small side note: As far as bodily functions go, I’m normally pretty “regular” – food in, food out. Sunday morning, however, after a terrible night’s sleep, I realized I hadn’t dropped any kids off at the pool since Thursday. Well, I thought, that must be why I felt bad – constipation! I went to Walgreen’s and dutifully picked up some sort of laxative.

As a test run, I took half the recommended dosage.

Well, it worked. And worked. And worked. And worked. My body exhumed waste products it must have been saving since my 8th birthday. I felt like absolute garbage, and spent the day shuttling between the bathroom and the sofa, dozing in and out of sleep. This continued the entire day.

Monday, I still felt like garbage, so took a work from home day, with the resolution that I’ll go see my doc Tuesday. Sometime around Monday afternoon, I managed to feel even worse; my body decided to add “occasional vomiting” to the mix of endless bathroom visits. On top of that, I started sweating. a LOT. The kind of sweating that soaks through your shirt and makes you dizzy.

My doctor’s office was closed by that point, so I drove myself to urgent care, waiting patiently in the waiting room while I soaked the surrounding carpet. They send me back, took my vitals, and promptly informed me they’re calling me an ambulance; apparently, I was tachycardic. The ambulance arrives, get me situated in the back (my first ambulance ride, for what it’s worth)… and my vitals looked normal. They take me to the ER anyway, because better safe than sorry.

The ER was less than useful, essentially chalking my symptoms up to dehydration. My blood tests looked weird, they said. But shouldn’t be anything to be worried about, they said. They sent me home.

The next day, I went to my doc; keep in mind, he was only my “doc” in the sense that he was listed as my primary care physician. I was not the kind of guy to regularly go to the doctor for any reason, and really only had him listed because of a previous job’s requirement for yearly insurance physicals.

He basically waved it all away as “the flu”, and sent me home.

Unfortunately, after this, my memory starts to become hazy of the exact day to day. There is a good reason why, which I’ll detail later, but here’s a taste; I got much, much sicker. Body-racking shivering episodes that lasted a half hour, followed by 3+ hours of flop-sweat. Vomiting. Trouble going to the bathroom. I couldn’t eat anything. I started hallucinating every time I closed my eyes – intense, vivid visions of dogfighting in space, of my body becoming sections of a logistics tractor trailer company (my brain kept trying to “will” my body to work by “driving” these trailers into the “correct” spots – this sounds crazy, which it definitely is, but at the time it had some sort of consistent internal logic I found comforting). I couldn’t sleep, but spent all day in bed. I had no interest in anything; everything made me nauseous, and the constant low-grade emergencies I was cycling through (hallucinations, vomiting, flop sweating, shivering) meant resting was fitful at best.

I kept going to the ER after hours, and kept going to the doctor when I could; each time, they would take some blood tests, puzzle over the results after a few days, then send me home. The doctor’s office would send me home as a flu case, the ER would send me home as a case of either dehydration, or OVER hydration. At one point, the ER agreed to hold me overnight for observation. I saw a pair of single doctors at the beginning, who asked me to recount my symptoms up to that point. They promised they’d get to the bottom of it. I never saw them again. I was in a hospital room for nearly 24 hours, and had to harangue a charge nurse to discharge me, as aside from the orderlies taking my blood every 4 hours, no one else came to see me; doctors were AWOL, and nurses had no information. I was finally discharged with no findings and a recommendation to take St. John’s Wart.

I kept getting sicker. My attempts to work were failures; I could barely keep my head up, and my coworkers later remarked that I was acting extremely strange. I would show up to work, dizzily attempt to focus on a screen for an hour or two, and go home. I kept calling off work, because I couldn’t do much except sweat/shiver in bed. Occasional trips to the grocery store (even in my fever state, I knew I had to stay hydrated and keep getting nutrients, so I bought a lot of fruit smoothies, crackers, etc. to try to eat) were equally exhausting and terrifying. At one point, I began shivering in my car in the parking lot; in the summer sun, with the windows rolled up and the heat on max, I shivered in the driver’s seat for at least 30 minutes.

During one of my revolving door visits to my doctor, because I wasn’t getting any better, I told him about my hallucinations. He sent me home with Ativan, which I later learned was more of a “please go away” medicine; it’s an extremely mind-dulling anti-anxiety drug that nusing homes use for troublesome patients. He still maintained it was the flu and told me to drink a lot of Gatorade.

After the subsequent ER visits and proclamations of being simulatneously dehydrated AND over-hydrated, I began monitoring my liquids intake to the ounce; my fever-addled brain was trying so, so hard to follow the doctors directions. I remember measuring Gatorade exactly, and trying to drink only exactly that amount per day, no matter how thirsty I was. It wasn’t making me any better.

Showers were Herculean efforts. Getting dressed felt pointless. My hobbies were actively uninteresting. My days were spent vomiting and staring at the ceiling in my bed, trying to will my body back to functioning. Tiny, inconsequential things became all-encompassing. A finished sandwich. A “normal” bowel function. A 20 minute nap.

A breaking point; I remember waking my wife up, terrified that I was dying, sobbing hysterically. This was essentially a panic attack, something I’ve never experienced before. I was hysterical. My wife, equally terrified of my mental state, tried to calm me down with food, which I a) desperately needed, as eating anything over the previous two weeks took hours for me to get down, and would rarely stay down anyway, and b) it was the only thing she could think of that would potentially calm me down (I recall blubbering about not eating for weeks). She dutifully cooked what I wanted, which I think was some sort of scrambled eggs, cheese, and black bean omelette. It took me an hour to eat a plate full. I took one of the Ativans, which at least made me stop rocking back and forth in my chair.

Looking back, that episode was absolutely terrifying. Out of my head, unable to sleep or eat, with my doctor still claiming it’s the flu, and the ER unable (or unwilling) to figure out the underlying cause of my symptoms, I’m basically begging my wife to help me, somehow, because after a week or two in this state, I’m starting to lose it. I felt powerless and no one seemed able to help me.

I was dying, and no one seemed to care.

Somehow my wife convinced me to seek a second opinion. The next morning, I mustered the strength to drive to Ann Arbor from Monroe. Normally a 45 minute drive, it took over an hour, due to me driving very slowly, and very carefully (my mental state at this time, it was very hard to concentrate on anything, much less drive in a straight line. No, I shouldn’t have been driving, but I felt like I had no choice).

I drove to the U of M hospital. Did I go to the ER? No, I tried to be a “good” patient (this was my internal reasoning) by trying to get an appointment at a specialist. I didn’t realize, of course, at the time, that most specialists at the hospital don’t take walk in appointments, and the lead times were measured in months.

I went to several internal medicine departments in the sprawling, huge hospital. I was swaying back and forth, sweating, barely able to talk. Each time they told me ufnrotunately I’d have to wait weeks to see someone.

I remember the last one; I came out of the lobby, and slumped against a bench. My mother in law, a former nurse, was texting me, asking if I was okay. I was not okay, and I felt defeated again, rebuked by another arm of the medical community.

I stumbled down to the University of Michigan ER. I tried detailing the last few weeks. The first doctor that came in looked like he was more preoccupied with the med student on his arm than dealing with me; I remember him talking to me and asking if maybe all of my symptoms were just in my head. I told him I didn’t think so.

Another doctor came in and noticed my stomach was pretty swollen (I’m a big guy, but even this looked odd, considering I hadn’t eaten a full meal in 2 weeks). He ordered a CT scan.

A CT scan, I’ve learned, is one of the basic diagnostic tools hospitals use to pinpoint gastrointestinal symptoms, such as vomiting, diarrhea, urinary problems, and the like. This was my first one in the whole 3 week ordeal.

An hour or so passes, and the doctor comes back, along with the head of surgery. I have a perforated colon, my gut is full of bacteria, and I need to have emergency surgery. On top of that, I have extreme sepsis (also known as Septic Shock). My organs were shutting down. I’m not leaving the ER.

The first ER doctor came in and immediately apologized. His groupie was not on his arm this time.

Wheeled into surgery soon after. My very first surgery! Terrified, feeling like shit, but glad something is being done. I gave the surgeons a thumbs up.

Wheeled out of surgery. My memory is patchy. I was pumped full of all the antibiotics known to mankind, because of the sepsis (septic shock, even with the best medical care in the world, which is what I was getting, has a 70% mortality rate). The first surgery was merely to clean out my body cavities of the septic sludge that had been leaking from my colon; my operating wound was basically vacuum-sealed with shrink wrap, left open, because the next day they went back in to actually remove 25% of my colon (the sigmoid colon, which is arguably the “least important” part of the colon; it’s the part that holds poo prior to you relieving yourself).

Happy 4th of July, 2018.

At some point during/after these two surgeries, I had a few “close calls”. My temperature hit 107 (which is where important enzymes start breaking down, leading to death). I was given an ice bath. I started losing oxygen a few times. In the surgical ICU, I had an entire team of people dedicated to simply keeping me alive. I had 4-5 IV carts stacked full of chemicals and medicine to flush through me, 20 bags of god knows what keeping me alive.

Being close to death, unfortunately, was not a big revelatory experience. I didn’t see any bright lights, I didn’t have a chat with any deities, I did not have an out of body experience. I do remember not being able to talk, due to my nose and mouth being full of intubation/breathing assistance tubes. I remember writing furiously the entire time I was awake, with a clipboard I kept nearby at all times; talking to nurses, talking to doctors, talking to my wife, and friends. I remember asking repeatedly for a pepsi. I remember being scared, and frustrated. My handwriting is not the greatest at the best of times; writing while weak, sick, and between surgeries was not my best penmanship (apparently a few times I had tried to write something to tell a nurse, but it was essentially an illegible sine wave, but i was very adamant about whatever it was)

I also remember being awake when they pulled the intubation tube out of my lungs. One, two… THREE (followed by what felt like an ocean of liquid leaving my mouth, and then passing out again).

I spent my 36th birthday in the surgical ICU, with entire teams of people keeping me alive. I remember my friends bringing dollar store decorations to distribute on the wall in front of me, including a big paper “HAPPY BIRTHDAY” banner; allegedly, when they asked me where it should be put, I responded “around my neck”. Classy, me.

The days after the second surgery are also patchy, but I do remember the hallucinations vividly. At various points, I thought I was on a ship that was slowly sinking without power, while some sort of demon kept trying to steal my bodily fluids; I thought I was on a moon base that was slowly decaying, being moved from section to section (the “rich” section to the “okay” section to the “poor” section), while also realizing the “moon base” was actually a fake resort (again… hallucination logic). Then there was the last vision; a bleak all-white “room”, where street gangs fought over my bodily fluids, often directly in front of me, while “angels” fought them off and/or held them at bay.

Yes, this all sounds insane, but believe me when I tell you, my brain thought it was real. Even when I tried telling myself none of it was real, to my brain, it was as real as the actual surgical ICU room I was in. Recalling the memories is as easy as recalling any other memory during this time; crystal clear. I even remember calling nurses into the room asking if the room was sinking, or if the hospital was falling apart. I also apologized for asking the stupid question, but my brain honestly could not tell the difference.

The hallucinations cleared out, and I stayed in the SICU for a few more days. Every day, my entire surgery team came in at 5am to check on me. And when I mean the entire team, I mean a dozen plus surgeons cheerily flipping the light on and poking and prodding at me; checking my wounds, checking my mood, etc. Eventually, the director of the SICU came by and told me personally that I had “beaten” sepsis; I didn’t realize it at the time, but it was an enormous milestone (to be considered “beating” sepsis, your white blood cell count in your blood has to be below a certain amount. Normal people have 2-3k white blood cells per sample. My blood was topping out above 25,000, and I think the threshold for septic shock was somewhere around 15,000). It meant I was getting better.

But then I found out I couldn’t walk.

A thing that they neglect to tell you during emergency surgery and ICU stays is that after a few days of being bedridden, your body’s muscels atrophy shockingly quickly. My legs, which were swollen to the size of tree trunks, were immobile. Sensations were weak, and moving them was basically impossible. But that was to be solved later, they said. Don’t worry.

Another thing that they tended to gloss over; boy, do you get stuck full of tubes. I had tubes up my nose. Catheters. Stents. Drainage tubes stuck all over my body, draining extra sepsis… gunk out of my body. I had two separate PICC lines. A PICC line is like a super-IV – a large plastic tube guided down your veins to distribute medicine or what have you directly to your heart. I had one in my neck, and one onf my arm, on top of 4 or 5 more IV lines on the rest of my arms.

I was Frankenstein’s monster. But I was alive! And getting better, apparently.

I was eventually transferred from SICU to “regular” ICU, which had a different host of nurses, and thankfully I was no longer considered in a dangerous state of living.

Then: the road to recovery. Every day, I was hyper-focused on ways to “progress”, even things I had no control over (infection count in my blood). I wanted to get better to get these tubes and medicines out of my body. I wanted to start moving around. I desperately wanted to get home. I was sleeping terribly (but still sleeping; it was a matter of comfort now, rather than delirium), and I had not a lot to do. Visitors helped; my wife hanging by me helped; the nurses and doctors actually caring helped.

Every couple of days, the surgeons would look at my various tubes and evaluate whether or not I needed them. Here, I must remark; as cheery and as amazing as the surgeons are, they really have terrible concepts of what constitutes “uncomfortable” or “painful”; once, at their normal 5am house call, they looked at my stent (which was routed up through my cash and prizes to my kidney, mind you) and asked “hey Mr Eikenberry, would you like this out?” “uh, yeah, i suppose….” without warning, they just pulled the entire length of the stent out. Ever had a plastic tube yanked out of your dangly bits? I would not recommend.

The stent was first of many; then some of my IV lines were taken out. Then, some of the septic drains (which were attached to what looked like plastic, fluid filled hand grenades) were removed; again, imagine a length of plastic tubing being pulled gingerly out of a part of your body you didn’t even know could hold a plastic tube, much less one of significant length.

The tube I was most concerned about, however, was the NT tube; that’s the thing that went up my nose, down my throat, and down to my stomach. The tube’s job was to suck up all the unused stomach acid in my stomach so it didn’t eat a hole in my insides (mind you, I haven’t eaten since I went to the hospital). The tube smelled and tasted of plastic, and was taped to my nostril; sleeping with it was a chore. At one point, I had finally dozed off only to wake up with a nurse fiddling with the tube; it had apparently slid out. She murmured “I’m so sorry….” before shoving it back into my stomach.

I hated that tube. I wanted it gone. I wanted to do anything to get it out of me, because I knew the removal of it meant I was one step closer to going home, AND to actually taste something other than hospital grade plastic 24 hours a day.

I still really wanted a diet cola.

There was a trial period to determine if turning “off” the tube’s suction would be okay, and then the big day of actually removing it came (another unpleasant experience, but welcome nevertheless); I remember bawling extremely hard when it came out, and the other nurses running into the room to see what the problem was; I had a very hard time telling them that these were tears of joy.

Later that week I had the first taste of food in what felt like years; a piece of lemonhead candy. I savored those things like they were the only food left on earth. The surgeons were quick to warn me that if the food I was attempting to eat came back up or otherwise caused problems, I’d have to deal with the NT tube again.

I never want to deal with an NT tube again.

My very first actual meal was a turkey burger; I ate it so slowly because I was terrified it wouldn’t “settle” in my stomach / intestines.

I also had a diet coke. Finally. Sweet, delicious diet coke.

Learning to walk was a very humbling experience. Going from being 35 and “healthy” (aside from being a fat guy that doesn’t understand the concept of moderation, I’m fairly healthy) to 36 and unable to walk, you come to terms with the fragility of the human condition rather quickly. The first few attempts to walk were more theoretical than practical; sitting up from the bed, or swinging my legs to the ground, were epic endeavors. Standing was another milestone. And then the walking itself; the first time I walked since the surgery, I was able to make it about 5 feet before collapsing back into my bed. Then ten feet. Then 25. Every attempt I tried to double my length.

Meanwhile, while I was recovering, my neighbor in another room was doing the same thing, except 5x as fast; he was a skinny guy, a twig really, but he had his walker, and a battery of oxygen tanks behind him, and two nurses trying to keep up with his pace. Every hour, he’d loop the ICU wing, over and over and over again. I asked one of the nurses what his story was; turns out, he was waiting for a lung transplant, and that was his exercise to stay in a good enough state to receive it (he later received his lungs!).

Well, dammit, if a guy with shit lungs could do that, so could I. He was my motivation.

More days passed, more tubes came out. Septic hand grenades, catheters, everything but the last PICC line, the one inserted into my arm. That one came home with me.

And the hole in my side.

See, when they remove a chunk of your colon in an emergency situation, the operation tends to leave your insides a bit raw and unable to function. So, thanks to the miracle of modern medicine (and plumbing), they disconnect your small intestine from your backside and instead route it outside your skin, which then heals around the intestine and locks it in place.

Do you want to know how weird it is to see your small intestine every day? it’s VERY WEIRD.

When this happens, they send an ostomy nurse to your room to train you (or your caretaker) in the new reality of having a chunk of your digestive track undulating outside of you. It was a very thorough training; unfortunately I was scarcely in the proper state of even dealing with the fact that I almost died and that a chunk of my intestine was gone and that this would be the new normal, so my wife had to pinch hit for me for the beginning. The gist is that there is a medical appliance that suctions to your skin, and then you slap a bag over it to catch any output.

I poop in a bag, so that’s a thing.

At this point, it almost feels normal, but it is mightily inconvenient. It is constantly embarrassing, and can be messy. In addition, the “appliance” part has to be changed out every few days, which is the whole process given to us by the ostomy nurse.

I suppose it’s better than dying, but it serves as a constant reminder of what I’ve gone through.

Once the ostomy training wrapped up, and the walking physical therapy wrapped up, and the banks of IV bags went from 5 banks to 3 banks to 1 bank to 1 bag to nothing, it was finally time to come home.

My wife became my full time caretaker while she dealt with the gaping surgical wound in my torso (sternum to belly button, and a bit more besides, sent home still essentially held together with staples and packed with gauze) and the ostomy bag situation. She also had to administer antibiotics 3 times a day, like clockwork, every 8 hours. Some were pills, others were IV infusions (which required more training by in-home nurses). Eventually, that tapered off.

I returned to work a little after Labor Day.

The full fall-out of my emergency escapade:
perforated colon due to aggravated diverticulitis
Severe septic shock due to the hole in my colon
infected abscesses on my major organs, including liver, kidneys, and lungs
4 blood clots around my liver (3 of them have dissolved, one remains, but should be routed around eventually)
PTSD and severe medical procedure anxiety
25% less colon, and an ostomy bag.
60+ pounds lost (since regained, because I’m terrible)

Here’s the kicker; all of this could have been prevented. Diverticulitis, if caught early, is a fairly common problem; it basically means your colon has bulged in certain spots, and those spots can be infected. If you watch what you eat, and take antibiotics if it becomes inflamed, you can live a normal life. The cure is simply a few pills and small meals.

Because the other hospital and doctor didn’t catch it, the infection got worse and worse until it finally burst. The sepsis wouldn’t have been nearly as bad, had the issue been caught earlier, with a simple CT scan. With a CT scan, a blown out intestine is easy to spot; indeed, the U of M ER found it right away. The attending surgeon personally apologized “on behalf of the medical community” to my wife on this missed, obvious thing, which is something coming from a surgeon from a different hospital.

Flu, my ass. Dehydration, my ass. St. John’s Wart, my ass.

Yes, I’m still very angry about it.

In august, I have my reconnection surgery scheduled. Barring a catastrophe, I should be back to “normal” after another 5-6 weeks of recovery.

Were it not for my friends, family, and most importantly my wife, I probably wouldn’t be here, in as good a shape as I am, all things considered. I’m lucky to be alive. And I’m glad to be here!

But it’s been a hell of a year.

Thanks for reading.