Bloodshitpalooza

This has been one fucked up week.

Last Saturday, I was writing the (damn good) update you would be reading right now, had I not been interrupted by the following event: shitting blood. Not good! This only happened once before, and that incident has significant relevance. At the age of five months, I experienced an intussusception. This occurs when part of the intestine folds back into itself like a collapsible telescope, cutting off blood flow to the affected area. Without treatment, the intestine becomes necrotic, and the patient dies within 2–5 days. In civilized nations, it can be detected early and treated easily with no lasting effects. Usually. In my case, it was not detected early; the doctor misdiagnosed me with some minor ailment and sent me home. A day later, my condition hadn't improved, so my mother took me back to the hospital. This time, we actually got some doctors who knew what the hell they were doing, which was good because I now had a systemic infection in addition to the bowel obstruction.

One doctor warned my mother that he'd never seen a child survive such a severe illness. Boy, was he surprised. I underwent a course of antibiotics so intense they turned my teeth yellow, and had several hours of surgery to remove three and a half feet of gangrenous intestine. They sewed the good parts back together—this will be important later. I was practically comatose for a few days, but afterwards, I recovered without much impairment, and experienced no more major medical mishaps since. That whole thing was a lot worse, and this won't be another "that time rmuser almost died" story. Of course, I didn't know that at the time, so I was pretty freaked out about the Mysterious Internal Bleeding. And this time around, I'm not young enough to forget the entire experience. Unfortunately.

I didn't realize it was blood at first. This had never happened before, and it was very dark, almost black. I wasn't even sure whether it was something to be concerned about, as there were no other symptoms. On Monday afternoon, we went to The Clinic to see Dr. Smith, who, for the record, is a hero. He confirmed it was actually blood, but without any other symptoms to narrow it down, it could be caused by nearly anything. In fact, due to the copious amount of blood (!), he wanted me admitted to Hospital One immediately for a colonoscopy. That wasn't going to happen, as there were (supposedly) six people ahead of me waiting for a bed at Hospital One, so I was sent for a blood test to determine whether I should go directly to the ER, or wait until tomorrow for an available bed. This was the first time I can remember having blood drawn, but definitely not the last!

Everything came back normal, so we went home, and the Mysterious Internal Bleeding actually subsided. For this reason, Hospital One elected to cancel my "reservation" on Tuesday, and gave me a list of gastroenterology clinics to contact. While attempting to schedule an appointment, I discovered something interesting: gastroenterologists treat patients who are either under 18, or 21 and over, placing me in a retarded bureaucratic grey area. The nearest clinic that would treat me was Drs. Jones and Robinson, who were in another state, and they couldn't see me until Thursday afternoon. Around midnight, the mystery shitblood decided it wasn't going to wait, and we proceeded to the ER. Tuesday bled seamlessly into Wednesday, which soon became the absolute nadir of the week, and unquestionably one of the worst days of my life.

The waiting room was surprisingly calm, and I got a bed in the ER within an hour of arrival. Funny thing, one of the staff came to ask the usual questions and I kind of accidentally came out atheist to my mother.

"Do you smoke?"
"No."
"Drink?"
"Nope."
"Religion?"
"None."
"Well... but... he's..."

Like it was just another bad habit. "Do you religion?" I mean, it's late, I'm in the ER bleeding internally, and I just didn't prioritize shoring up that particular rampart of bullshit. Luckily, my mom is a decent person who won't give me trouble about it when I'm in such a situation. She was more upset when they told us they had plenty of beds available yesterday! Major communication issues going on somewhere along the line. Anyway, I got an IV drip, and they dragged a needle back and forth under my skin like a metronome as they tried to draw blood, but kept missing the vein. Once they finally extracted some, they noticed my hemoglobin had dropped by one unit since Monday, though it was still within normal range. I was sent for red blood cell scintigraphy to check for Meckel's diverticulum, or any major GI bleeding. During the procedure, technetium-99m was injected as I lay under a large metal scanner, and it soon became visible on the monitor as numerous flickering white and grey dots in the shape of my lower abdomen. It seemed very low-resolution, but the stomach, liver, kidneys and bladder were clearly discernible. They found no evidence of a major bleed, which was good. What happened next was not good.

To check for any stomach bleeding, they ordered a gastric lavage. This involves inserting a nasogastric tube to irrigate the stomach, remove its contents, and look for blood. If you haven't experienced this, you're incredibly lucky—it's very difficult to convey how much it sucks. The moment they started trying to push a tube through my nostril and down my throat, the higher functions of my brain seemed to shut down completely, taken over by sheer terror at the raw sensation of it all. It felt like someone had knocked the wind out of me while I was at the bottom of a deep pool, and my only coherent thought was "I am going to fucking die, choking on my own vomit, surrounded by doctors." It seemed like an eternity, but I somehow managed to marshal whatever reasonable parts of my mind were accessible, and overcame the initial panic reaction.

Of course, it was still incredibly uncomfortable once it was inside. They didn't find any blood, but did that mean they could take it out? Hell no! They wanted to wait for Dr. Jones to arrive, just so he could personally confirm there wasn't any blood in the totally clear fluid removed from my stomach. Awesome! Since they had no idea when he would show up, they took me to a room upstairs. Every time I heard footsteps nearby, I was hoping he had finally arrived, but that was not to be the case. The first person who came to my room was a minister, offering communion. Do they ask your religion just for the hell of it? I appreciated the thought, but I really wasn't in any condition to eat or drink a deity, unless they could send Him in through the tube.

For two hours, I experienced that sensation of having something caught in your throat, and being completely unable to dislodge it. Caught deep within your sinuses, also. It was morning by now, and I'd been awake for nearly 24 hours. Objectively, that's practically nothing in terms of true sleep deprivation, but these were adverse conditions, and my mind was just falling to pieces after the whole experience. Every second that ticked by seemed to drag on forever, and I genuinely believed this was not ever going to end. That's when Dr. Smith showed up—and he's usually off on Wednesdays. Within 10 minutes, he got in touch with Dr. Jones, convinced them to remove the tube, set up an appointment with Dr. Jones at Hospital Two in less than an hour, and had me discharged. I am very fortunate to know this man.

Remember that peculiar age-related quirk of gastroenterology? Well, it turns out Hospital Two is a children's hospital, which meant we had to wait in a room full of babies. Unable to intelligibly describe their myriad afflictions, they resorted to SCREAMING AT THE TOP OF THEIR FUCKING LUNGS. Once we met Dr. Jones, we discovered that he, too, is a hero. He confirmed it was still blood—I hadn't magically begun metabolizing food into cranberry juice—and scheduled me for a colonoscopy and an EGD on Thursday. He ordered another blood test, stat, to check whether my hemoglobin had dropped any further. If so, I'd be admitted immediately; if not, they'd send me home. We soon discovered that in Hospital Two, "stat" actually means "whatever". The blood test would have to wait, as we had to spend a good half hour talking to a financial advisor and signing numerous papers I didn't even bother to read. I was so entirely out of it, I just laid my head on the desk between interruptions, desperately trying to get some microsleeps in. Did I mention we're two of the 47 million US citizens without healthcare coverage? Now that's a pain in the ass.

Somehow, we managed to navigate the financial gauntlet to their satisfaction, and with their vague directions, we semi-consciously wandered through unfamiliar, brightly-colored hallways. It was like flying a pod into the monolith. We located the blood lab, which was in a rather secluded offshoot of the Screaming Infant Waiting Room. That's not entirely accurate—we still weren't certain of exactly where the lab was, as there were two identical unmarked green doors right next to each other. There was a doorbell, but someone else waiting there informed us it was non-functional, at which point my mother sort of flipped out and started pounding on both doors until someone answered—but they didn't even work there. Eventually, the phlebotomist made an appearance, and she was rather concerned about how pale I looked, and my inability to hold my head upright. I was so exhausted, it felt like my brain had liquefied and dripped all over the floor. At this point, I thought it'd be a miracle if I had any hemoglobin left at all. She informed us we wouldn't find out for at least an hour, which was rather puzzling considering the last two tests took less than 20 minutes. Naturally, the place to wait was the Screaming Infant Waiting Room!

Like Ben Stiller trying to fit his oversized suitcase into a plane's carry-on compartment in Meet the Parents, I wedged myself sideways into two adjacent child-sized seats, stuffing my sweatshirt under my head. With fluorescent lights shining in my face, a television blaring Barney the Stupid Goddamn Dinosaur three feet from my head, and wailing babies all around me, I think I may have actually fallen asleep for about 30 seconds somewhere in there. Were I not so tired, my reaction to all this would have been considerably less subdued. While I drifted in and out of consciousness, my mother ventured down to the cafeteria, and found that Powerade is the only drink they sell. In a children's hospital. Amazing. After waiting for over an hour, we were told that my hemoglobin had actually increased. At 11:30 in the morning, we finally went home... to sleep? Hahaha, sleep? Fuck no, that would be too easy!

A colonoscopy requires preparation quite far in advance. Specifically, this involves drinking four cans of Sprite with some variety of horrid doomsday laxative, within 90 minutes. And that's actually a bit of a challenge, considering it also induces nausea. I'd say throwing up repeatedly and shitting bright red watery blood for several hours is pretty much the antithesis of sleep. Of course, once I finally had the opportunity, I found it difficult to sleep very well, as I was rather concerned that I wouldn't wake up after having lost so much blood during the process. These concerns were unfounded, and Thursday arrived uneventfully. Today, I would get my diagnosis, whatever it may be.

Thursday turned out to be much better than Wednesday. That isn't saying much, considering how much Wednesday sucked, but at the time it was quite a stark contrast. Everyone totally had their shit together, which was a pleasant surprise. We went to Hospital Three, right next to Hospital Two, and waited for only a few minutes in a room entirely devoid of babies and other loud things. Once admitted, I got little electrodes stuck to my chest, a pulse oximeter, the whole deal. Before the procedure, Dr. Jones told me he'd treated someone around my age yesterday who had the same symptoms as me, and the same surgery as an infant. In his case, it was caused by an ulcer on the site where the intestine was sewn back together. This was quite reassuring. Then they injected the anesthetic, and the last thing I remember was someone dimming the lights and turning on one of those iPod stereos. It was playing Celine Dion.

I slept dreamlessly, and awoke somewhat episodically. Laying in the procedure room with the lights dimmed. Back in bed, with nobody around. In bed, with my mother sitting beside me. Dr. Jones telling me it's just a little ulcer, right where the intestine was reattached. (Specifically, an ileocolonic anastomotic ulcer, but there's only one other result for that phrase online.) The relief I experienced at that moment is indescribable. The curiosity and stress of the whole situation were much worse than the painless blood loss, but the Mysterious Internal Bleeding had been defanged. It was mysterious no more. He prescribed Prevacid, and said I shouldn't take aspirin or NSAIDs—Tylenol only. Although he said I could have a "normal diet", I certainly didn't take that as a cue to immediately resume eating garbage. I chew slowly and thoroughly now. I take the time to chill out, notice life, sleep without worry, and appreciate every moment that my innards aren't bleeding. And ever since that day, there's been no blood at all.

Update, 2 July 2008: It's been three weeks, and there still isn't any blood. I also don't need to take Prevacid any more. I went to see Dr. Jones for a follow-up today; he wanted to do a test for Crohn's disease, but he thinks it's probably nothing, since I have none of the associated symptoms. I had some blood drawn again, which will be flown to San Diego, home of the only laboratory that does this specific test. Does rmuser have the dreaded Crohn's disease? Find out in seven business days!

Update, 18 July 2008: In case anyone else is looking forward to finding out whether I have Crohn's disease as much as I am, don't hold your breath. They've already sent us the bill for the tests, but they won't give us the damn results. When we called Hospital Two to ask about this, they transferred us to a recording, telling us to leave our information, and they'll look up my results and call us back in... three to five business days. Essentially, fuck Advocate Hope Children's Hospital. Their doctors are decent, but most of them also practice elsewhere, and the rest of their staff appear to be functionally retarded. I shouldn't even have to go to a children's hospital in the first place, and there's no excuse for them to jerk us around like this.

Update, 21 July 2008: Well, it seems the results "do indicate" that I "might" have "something" that's "in line with" Crohn's disease. We're going back to see Dr. Jones in 10 days—at his own office, not the children's hospital. Hopefully that'll narrow this down to "yeah, you probably have Crohn's" or "no, it's probably nothing". Obviously, I'm hoping for the latter. I'm still entirely asymptomatic, and if I do have it, hell, I've had it this entire time anyway. Could be worse.

Update, 31 July 2008: The test (IBD Serology 7) came back positive for Crohn's disease, but for now, Dr. Jones doesn't really want to put it down as anything specific. Usually, Crohn's initially occurs in the terminal ileum, and though this area appeared grossly normal, histology showed inflammation (but without granulomas). The official diagnosis is ileitis, which just means there's some kind of inflammation in the ileum. For the next month, I'll be taking mesalazine, an anti-inflammatory specific to the digestive tract. He wants to see if it reduces that whole chronic diarrhea thing I've been having my entire life (due to missing most of my colon), which may actually be caused by inflammation. In three weeks, I'll have a blood test (CBC/CMP) to make sure it isn't causing any sort of kidney, liver or blood disorders, but my mother's boyfriend is in his 60s and on the same drug for colitis, so I'm not really worried about that. In a month, another visit with Dr. Jones. There's still no blood or other symptoms, and hopefully it'll stay that way.

Oh, and he wrote off thousands of dollars in bills when he found out we have no coverage. He is fucking incredibly awesome.

Update, 28 August 2008: Mesalazine didn't really do anything at all; I'm pretty sure loose stools are just what happens when you're missing that much of your intestine. There still hasn't been any blood or other symptoms. The blood tests came back normal, aside from one part (I think it was MCB) being a bit low, which could indicate a slight iron deficiency, but nowhere near anemia or anything. I don't need to take mesalazine any more, and I'll be on budesonide for the next month to see if it changes anything. It's a steroid that primarily acts on the terminal ileum, with a low risk of systemic side effects. So, we'll see how this goes.