Foreword: I have no idea how or what to write this as or what to put in or leave out. Maybe trying for a goulash of facts, insights, a dash of bad humor and puns where I can, ramblings, perspectives, or some good old-fashioned "get this off my chest". Trying my damnedest to avoid the "poor me" nonsense because I genuinely don't feel that way.
You have been warned, (also details may get gross, but I'll semi-professional best as I'm able for general reading.)
So I've had quite the unexpected medical journey here the last 2 months. Started off as just some bad diarrhea, progressed to barely able to even eat or drink and some bad fevers so it was finally time to hit the ol' ER.
After about a week inside and some scopes in places better left unmentioned, I was diagnosed with Ulcerative Colitis which is just a fancy way of saying I had ulcers all over my guts; I was released soon after with some prescriptions. The initial plan was to just treat with steroids (not the Atlas body kind), which seemed to be doing ok except for a tiny lapse in the steroid prescription (ran out? wasn't given enough? my own stupidity/panic disorder? still unclear on that one) and I started excreting blood rather than stool.
Given that my actual appointment was still a day away, we decided to try and get snuck in as a walk in appointment with the doc. While I was there, it was one bloody bowl in the waiting room bathroom after another, and it wasn't long before it was lights-out for me in the hallway of this doctor's office. Fortunately my faithful father was right there with me so I didn't crumple into a total heap. I came to (big emphasis on "-ish") surrounded by the doc and a heap of nurses.
A rather hazy wheelchair run later, I'm back in the hospital, though baffling enough. my blood count wasn't quite "low enough" to start transfusions, despite the fact that I had a hard time figuring out where my hand ended and the bedsheets began. Eventually though the transfusions did start, and I went through pretty much the same process as my previous hospital trip.
Then one night, my body decided once again it had quite enough of this whole new-fangled "blood" thing, and that landed me in ICU for a while. I found out later the doctor was trying every other option he could to avoid surgery (probably because of my age) but it seems as though this was almost an inevitability.
Sure enough. late one night (while trying to sleep. which if you haven't had the pleasure of trying to sleep in a hospital, believe me when I tell you it's more "trying" than "sleeping" for a plethora of reasons), I feel a sharp pain in my left lower ab area. Now, I've never actually been stabbed before by anything larger than a nail, but if I were to guess, that pain is what it feels like. Worse, when it happened... it's difficult to explain but something just felt ... wrong. Again I find myself struggling with how to write this without sounding like some stupid "woe is me" pity party nonsense, but suffice it to say it was a long 5-6 hours of me yelling in pain more than I'd ever fully admit to (I couldn't take pain meds because my blood pressure was just constantly too low).
It seems to have been the last straw for ol' Joe "The Proverbial" Camel's old back though, because I started straight-piping blood. At one point they had 2 bags at once going at max speed off tbe IV pumps. I found out later I set a hospital record (dubious honors, hoooo!) since they replaced my blood volume twice. Obviously this is the event horizon, so it's surgery time. A quick bed wheel over to the room, a few breaths in a mask, and it's off to la-la land.
Now for a fun section: while under whatever gas it was, I dreamed a most peculiar, wonderful, and a little bit terrifying dream- the most vivid I've ever had. I found myself in this endless whitescape, devoid of everything except for these otherwise unremarkable doors save for the fact that they were attached to nothing in particular and some were even several 10s of feet in the air. With nothing in particular better to do, I decided to open one at random, and stepped through. On the other side, though I felt the room had, in fact, changed, it seemed much the same as the old. More unremarkable doors attached to nothing in an endless whitescape. I went on doing this, for how long I I couldn't possibly say - time itself seemed to have no bearing here. But after a while a thought crept into my mind (while inside my own mind... move over Twilight Zone): "Perhaps this bizarro land is the way back to my reality.... if I can't find my way back, does that mean I get stuck in a coma?" With that unpleasant thought prodding me forward, I started opening doors with a little more purpose. Inside this whitescape I found little pieces of the operating room next to one of the doors. Opening that door I found bits of the bed. Then, the hallway. On and on like this each one pressing me forward more than the one before it until-
My eyes snapped open, and the bitter taste of reality greeted me, and I found I was thankful for all the stupid. painful. and otherwise annoying things that were telling me I was alive. Multiple needles stabbed in both arms, a catheter in my nethers, some kind of awful medieval torture device tube in my throat, and the driest throat, mouth and lips this side of the Sahara... along with the generalized feeling that I had challenged a 800 pound gorilla to a game of rugby. It was a very, very long three days after that, but I knew from the moment I opened my eyes I had escaped death, thanks to some very talented doctors.
They had to remove my colon AKA large intestine for the most part. It was just so badly ulcered that the healing process itself would cause major bleeding. The pieces of the wall would heal just enough to float out and attach to each other, creating a small blockage (think of a capital "U" and the top parts of the U would float together and stick to each other) and anytime a piece of food would pass: RIP. More blood loss. One of the surgeons said it was the worst she'd ever seen, and she suspects it was the worst the head surgeon has ever seen as well. It's enough of a case that they came to me afterward to ask if they could send my case file and such to (drumroll) Johns Hopkins for study! Dubious honor again of course but why on earth would anyone say no? Nothing would make me happier to hear than that they advanced the field or help save someone from this ordeal. Apparently ulcerative colitis is still somewhat poorly understood: they can't even definitively say what causes it. Who would say no and why?
Now, In place of the colon, the doctors performed an Ileostomy, which basically means they pulled the back end of the small intestine through the abdominal wall- one might even say I have my butt on my gut. It's definitely jarring, but the more I read on it, I honestly feel like "Yeah this isn't something I'd ever choose, but as far as medical conditions to live with, this doesn't seem so bad." I basically have to wear a little bag on my stomach, empty it out about the same rhythm as a normal bowel schedule. replace the bag 1-2 times a week, and keep an eye on the seal for messes. Hell, you can even shower and swim with these things apparently, though I'll definitely be playing it safe for a while. Replaced my first bag on my own today and frankly, so far I think I did a better job then some of my hospital nurses.
I am now in the post-op recovery process which is definitely at least top 5 in most emasculating things that can happen to a man. I lost self-locomotion about the time of the ICU transfer, and is now my current biggest enemy. I've been fighting to get my muscles back every day in the hospital post-op with physical therapy and doing isometric exercises in the bed, but those muscles are agonizingly slow to come back. 31 year old man and I can't even pull myself to an upright position without help. I can walk once I get to my feet somewhat ok, but I gotta grab onto everything. And shoot-my-pride-out-back, I'm even using a damn cane, but if I fall, I got no muscles yet to get back up on my own. But I'm finally discharged today and typing this from the wonderfully and sorely-missed comfort of my own bed, and now on the long road back to something resembling human.
For reasons I've still yet to discern, Somebody wants to keep me around on this ol' mudball. 2 of which are my loving parents, for whom no eloquence in any language could ever truly do justice to the love they have poured on me through this ordeal. It's a 40-ish minute drive from home to the hospital, and I had to threaten to ban them from my room JUST to get them to agree to a one-day-on, one-day-off visitation deal. From our usual deep-space philosophy talks with Dad to just the comfort of holding Mom's hand, my rocks in this storm held fast and made many a rotten day much more bearable.
I hope anyone reading this is even half as blessed as I am, and I hope that you remember to appreciate what you have with every free moment. Even now I lament the simple treasure of being able to sit upright in bed, but I'll work what I can to get that back soon. I'm out of the woods and on a slow but grateful walk home.
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