I’m going to jump to how a four/five-day stay became an eleven/twelve-day stay for a (major) surgery, entailing: travel to the city/hospital, pre-op, prep, surgery, post-op, discharge, emergency room, and thereafter.

If you would like to read more about my “journey” up until now with chronic bowel issues, you can read this post here. It gets more into detail about meds, exams/tests, what worked for me, what didn’t work for me, specific dates, etc.

From IBS-C to Ileostomy

I’ve dealt with bowel issues as far as I could remember. I don’t know if I was born with them or I just got them at some point growing up. I lean more towards the latter, but who truly knows?

So, through the years I dealt primarily with severe constipation throughout my life. Hell, I didn’t even know it was an issue, in spite of the symptoms getting progressively worse, until I was in my early twenties when everything came to a head and when I discovered going only once every two weeks wasn’t normal. But, like I said, it came to head and finally I sought out medical treatment.

Through two years of exams/tests that lead nowhere and after switching GIs, I was diagnosed with IBS-C/CIC (irritable bowel symptom – constipation/chronic idiopathic constipation), “nerve pain” in my lower right hand side of my abdomen (a little above the hip bone), a bit later diagnosed with PFD (pelvic floor dysfunction). 

I was given rounds of different meds to help. Some did. Some didn’t. Those that did stopped. Combining them in different ways was about the same. I did PT for the PFD. It helped a little but nearly not at all.

Then, I was referred to another GI. More/different combination of meds, resulting in about the same as before.

Around this time, my wife and I thought maybe I had a neurological disorder, like MS, because a urologist diagnosed me with a neurogenic bladder (basically since I was constipated for so many years my large bowel had pressed against my bladder enough and for so long that it damaged the nerves). The doctor was convinced I had MS. Almost every doctor I saw did, too.

I did all the MRI scans available, all clean. Only thing I didn’t do was a lumbar puncture. From what I was told and read online, it’s almost impossible to find MS via lumber but all the scans to be normal. So, I didn’t pursue that any further.

Then, I was referred to a neuro-GI.

During that time, I had given up finding a cure, just wanting to get new drugs that may or may not work and move along with my life. But he ordered me a test I hadn’t taken before and through that, confirming I didn’t only have IBS-C/PFD but severe colonic inertia (simply: my large bowels just didn’t work). And since I was at the end of my rope, trying all available prescriptions, OTC medications, and whatever else I gleaned over the years, the last and final option was clear: surgery. 

The GI suggested a partial colectomy (cut out a part of the large bowel, sow it back up, voila), and that’s what my wife and I had in mind when visiting the first surgeon. But he had other ideas, saying that the whole large bowel was fucked and I’d need a total colectomy with IRA (total removes the whole large bowel/colon and IRA is ileorectal anastomosis, which essentially is sowing the end of small bowels to rectum).

I’d be lying to say that fear hadn’t struck through me. Not what we expected. On top of that, the surgeon had only done ten of this type of operation in his twenty-some-odd-years of his career; moreover, my wife didn’t get a good vibe from him. I was sure he was a good surgeon but likely the aftercare wouldn’t have been good (oh lo, how much of an idiot was I to think another surgeon would be any better).

We didn’t go with him, to say the least.

After that, I scheduled an appointment with a different surgeon for a second opinion, one who worked at the second best hospital in the world. If I was having some guy sift through my insides, I might as well get the best we could afford. 

So, my wife and I went and talked to him and two residents for quite a while. His approach was similar but cautious, that we would do an ileostomy first for six-to-twelve months, see if that fixed some/all of my issues and if it did, then we could pursue a total colectomy with IRA. If it didn’t, then he could just reattach the small and large and voila.

He made us feel reassured and there weren’t any bad vibes, so we scheduled the surgery.

Now let’s jump ahead a year…

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Travel to the Hospital

The hospital I was having my surgery at was two hours away in a city we only visited once before, at the initial appointment for the surgery (the one of the two times I actually saw and spoke to my surgeon). 

Strangely, I felt nothing, ambivalent; neither anxious or excited (later learned emotions were playing tricks). Like, yeah, this is just a thing happening to me, focus more on getting done with all of it so I can get back home and live my life. I had books to work on, to read, weights to lift, a bunch of other bullshit that seemed more entertaining and enjoyable than getting a hole cut into me (more on that later).

We, my beautiful wife and I, booked a hotel for one week for the surgery, a hotel associated with the hospital and on its campus. Shuttle buses went to and from a couple hotels and the hospital on campus, arriving about every fifteen minutes, so our car wasn’t necessary. Convenience was key, since if something happened during surgery or recovery, my wife would be able to get to me as soon as possible. Also she could return to the room without going too far, the neighborhood not the safest. The hospital’s campus was within its own weird money bubble.

We arrived on Monday for surgery on Thursday, and everything was fine. The hotel was a hotel. Our plan was to get back home at the latest the following Monday/Tuesday. Sounds simple, right? Right? Of course it wasn’t, unaware it was the beginning to an end.

Post-Op

I felt the same indifference as I did Monday, but more resistant to the tedium of the five appointments filling our day: intake, blood-work, cardiology, etc.

It didn’t help that the hospital was enormous, way bigger than any hospital I’ve been to. Thanks to the maps on the walls and the Red Coats (that was their position title? More like Guides) and receptionists, my wife and I were successful, navigating the multilayered labyrinth, managing to get to each appt early or on-time. 

It also helped that the appointments were all within a five or so hour time period, most on the same level of the building, because having to wait hours between each or run back-and-forth to the elevators would’ve sucked.

Once they were all said and done and as we waited for the elevator to take us down to the lobby, I realized that my ambivalence to the whole trip/surgery was my mind automatically using a childhood C-PTSD defensive mechanism: depersonalization and dissociation (I do the latter a lot, like I’d say 95% of my day is spent in my head, just some thoughts inside a flesh-and-meat machine). 

It randomly hit me that I felt the way I did, because it felt like it wasn’t happening to me. I watched another version of myself go through these things and the “real me” was unaffected by what was happening and what was to come.

Although I recognized what mentally was happening, it changed absolutely nothing. I remained in the same third-person POV hollow numbness. And, honestly, I didn’t mind… unfortunately when I needed it the most later, it failed me.

We finished Post-Op Day by getting room service at the hotel and my wife and I caught up on Law & Order: SVU and Organized Crime.

Prep

Nothing really important happened that day, just chugging a gallon of syrupy, chilled water and chasing it with blue raspberry Jell-O and Frost Glacier Freeze Gatorade for ten hours; the gross cycle broken up only by warm chicken broth, antibiotics, and a shower with antibacterial soap.

We nearly got caught up with Law and Order since I couldn’t leave the hotel room, so that was nice.

Surgery

Part One

I don’t think I slept that night, maybe an hour or two. I still was in the haze of depersonalization and it seemed it wasn’t going away anytime soon. Didn’t bother battling against it, letting it flow unabated.

I had to take another shower with just the antibacterial soap before the surgery time of 6AM. Wasn’t allowed fluids or food, which sucked. Guzzling water made up 95% of my life, so…

We took the shuttle and got to the hospital around 5:30AM, got lost finding the huge, unmissable surgery lobby, got turned around by the incorrect info on the directional signs, but reached the front desk before 6AM. 

Then, we waited… 

A 3-D model of a rotating, blooming tree played on a wall from a projector; families sat around talking to one another, on their phones, ate Panera Bread or drank their Starbucks, passed by on foot or in a wheelchair or on crutches; I think someone read a book somewhere; and seemingly everybody had an AirPod in their ear, patients and staff alike, except for one guy who blasted his music from his phone, raw.

Eventually they called me back around 9AM and was given the whole spiel prior to any surgery: no earrings, rings, piercings; no metal bones or joints or pacemakers; etc. Curtain thrown shut, I mashed my clothes in the soft blue bag they gave me, got into a hospital gown, and lay under the blanket on the bed. 

There was awful phone service, so I couldn’t text my wife, so I made a dent in A Short Stay in Hell by Steven L. Peck (good book, recommended!).

Then, my wife was allowed back to see me. 

We talked about things people talk about before a surgery or while in a car dealership’s lobby waiting for their car to be fixed in the repair shop. The curtain swished back and the same nurse from before came in. Still felt emotionally nothing. My amazing wife took the rest of my belongings and we said our goodbyes. The surgery was major, but the mortality rate was extremely low, so I was sure I was coming back.

I watched her watch me leave as I was pulled through wide, gray hallways with bland paintings and lights and reflective floors. Those who passed by didn’t notice or care that I was there, another person on a bed getting cut open, whoopee. The orderly (I think?) handed me off to a surgeon on the team of my actual surgeon (who, if you noticed so far, I have only met once and only at the initial appointment several months prior to this). The team member was nice, spoke in a way that made it difficult to understand what he was saying, but assured me all would go well. 

The sterile operation room had blinding lights and was full of people in blue and green scrubs, face masks, hair nets, etc. It looked like nothing on the TV shows, no dim illuminance, no shadows, no balcony for an audience to look down upon my bowel being torn through my abdomen.

Medical staff swarmed when I was moved to the surgical table, asking questions, slipping an IV or two or three in whichever arm they were closest to; the anesthesiologist (I think?) talked to me as though we shared a bond because we lived within thirty miles of one another, as though I wasn’t already answering questions from another person. He continued to talk to me when the oxygen mask was shoved over the lower half of my face. 

Probably still did when my world disappeared.

Thank you so much for reading, part two will release Thursday (Feb. 19)!

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