Life is just a long, slow process of dying.  That's what I kept telling myself anyway.  It's kind of a comforting thought when you're in a lot of pain and you're slowly wasting away.
   Slowly wasting away is what I had been doing for some time.  In July of 2003 I entered a new phase of my Crohn's disease.  The frequency, duration, and intensity of my pain began to increase and I found myself suffering from foods that I had previously considered "safe".  I began to have problems with bloating, my stomach would swell and become painfully distended, and the diarrhea, once common, became almost incessant.  I tried changing my diet, but I seemed to react to everything.   After about two months I went to the doctor.
   Dr. Farrer was surprisingly oblivious.  I tried to tell her my history and to explain the frightening new complications that had led me to her to no avail.  She suggested a medication called Pentasa that had failed to help me a decade before and scheduled the standard tests for Crohn's disease.  Were her mind a rolodex, I suspect the index card describing me after that first meeting would have read something like, "Crohn's disease, resistant to treatment".
   Within the next three weeks I had the scheduled examinations.  A barium swallow should take three or four hours at most, but I spent the majority of the day waiting on the stuff to go down.  The x-rays they eventually settled on were blurry and hard to read, but they showed major stricturing of my terminal ileum as well as indications of fistula.  During the following weeks, I wasted a lot time in useless worrying, tinkered with my diet, and stopped taking my acne medication.  By the time of my follow up appointment two months later, I felt like I was beginning to get things back under control.  I suspected the acne medication of aggravating the Crohn's disease and hoped that things would quiet down if I just held out long enough.  I asked Dr. Farrer to allow me more time to try and work things out for myself.  I was feeling quite well that week, so she acquiesced pretty readily, though she did arrange for me to meet with some GI (Gastrointestinalogy) doctors from the clinic, Dr. Strickland and Dr. Ma.
   I recurred rather badly just after that appointment.  The next few months were extremely painful.  Sometimes I would give up hope and just wish for an excuse to die.  Most of the time I wanted nothing more than to go to sleep and never wake up.  Every once in a while, I would be granted a temporary respite and for a few days I would be able to eat certain foods, but the rest of the time I was either extremely hungry and fatigued or in extreme pain or both.  It is hard to describe exactly what happened, if a human being can decay then that's what happened.  I decayed.
   By January, the pain never left me completely.  The Crohn's disease might take control at any hour, and all I could do is cover my belly and back in heating pads and hope I fell asleep.  I almost never slept through the night, I would wake up in intense pain or in a puddle of shit.  Some nights I woke up a dozen times.  Some nights I only slept a few hours.  I quit cleaning my apartment and rarely managed to wash dishes or do my laundry.  It was too much work to shampoo my hair.
   On May 4th I went in for a clinic visit with Dr. Strickland.  I had tried every diet and alternative treatment that seemed even marginally plausible, but I was still in pain and my weight had dropped to about 136 lbs.  My appointment was at 1:00pm, but I barely managed to get up and clean myself enough to be presentable.  When he came in to see me, I said, "I give up.  I can't deal with this on my own... What do you think I should do?"  Dr. Strickland looked at me sympathetically and asked, "How do you feel about the hospital?"
   I never went home that day.  I spent the evening sitting in the clinic waiting for a bed to open up in the ER.  Eventually they found one for me, and a little team of people who I would identify much later as the general medicine team (UNMH is a teaching hospital) overseeing my case came to talk with me.  One member of the team was a medical student named Deborah Yeh.  She asked me to describe what it's like to have Crohn's disease, so I told her.  I was not in an unusual amount of pain, but the team seemed very worried about my periodic bouts of discomfort.  My gut was contorting a bit, but the disfigurement was nothing like the lemon sized lumps I had seen move across it from time to time.  I declined morphine several times.  Later I was given an IV; the nurse only took two tries.
   They came for me that night and moved me to a bed in 5 East, the oncology ward.  By that time it had been about 30 hours since I had eaten anything, so I was beginning to feel better.  I called my father and my mother, and later I got in touch with Becca who got in touch with everyone else.  My friends brought me lots of stuff I needed and lots of stuff I didn't.  Becca outdid herself in the unnecessary stuff category; I now own a white gorilla.
   The next day they put an NG (Nasal Gastric) tube down me to suction out anything that might be backed up into my stomach.  It took two nurses three tries to get it threaded through my nose.  By the time they were finished I could smell and taste blood and my sinuses felt like someone had rammed a tube through them and left it there (which they had).  It was very unpleasant.
   The NG tube didn't stay long.  The following day I convinced a doctor that it should be removed since it was remarkably unpleasant and there was nothing coming out of it anymore.  I was not being fed, so it was decided that I should be given a PICC (Peripherally Inserted Central Catheter) line (a very long, high volume IV, typically it enters somewhere in your upper arm and is threaded to the region of your heart).
   The fellow who came to give me the PICC line was very determined.  He'd stick the needle in and work it around trying to get it to stay in my vein, after perforating a particular region badly enough he would move over a bit (sometimes only a few millimeters) and try again.  He dug well over a dozen craters (they were open wounds by the time he was finished) in my left arm and seemed very frustrated.  To my great joy, he eventually gave up and declared that I'd have to go to the special ops lab.  Today, nearly six months later, I still have a fairy ring of scars from that encounter.
   I was taken to the special ops lab the day after my experience with the PICC nurse.  The man in charge of the team was very nice and seemed to object to causing pain.  This was unfortunate since I proved no easier to PICC under fluoroscopy than otherwise.  They tried several times in my right arm and my left, and they even tried one of my legs.  Finally, in frustration, they placed my right arm under the imager and injected fluid into my IV.  On the monitor my vein instantly contracted in a whole series of places.  I had not been stuck; just injecting the liquid was enough to cause the whole length of my vein to spasm.
   They sent me back to my room.
   The next day I was returned to the special ops lab.  I had been deemed unPICCable, but they hoped to put a central line in my neck.  I lay in suspense as they slid the needle into my jugular.  My joy when they told me that they had succeeded was such that I told them to "make it as permanent as possible".  They sewed the connector into my neck, soaked me down with betadyne, and covered the site with a clear elastic wrap.
   At some point during this drama I was transferred from 5 East to the neurology ward in 5 South.
   It was a confusing time for me; it seemed that fifteen doctors were marginally involved in my care while none were actually focused on it.  I received wildly conflicting assessments of my condition, I had a meal taken away from me while I was eating, I refused several meals that were brought to me in error, my medications were shuffled with pizzazz, my TPN (Total Parenteral Nutrition) failed to materialize until almost three days after I got the central line, I was told that I would be out in a week, and I was told that I would finish May in the hospital.
   My one certainty during this time was the attention of my med student, Deborah Yeh.  Deborah would come to check on me at least once a day, she answered my questions and provided moral support, and she communicated with the hive mind that managed my care.  Deborah helped to make those first two weeks in the hospital bearable, and for that I am eternally grateful.
   I began to perk up as soon as they started feeding me intravenously.  It had been about five days since I had eaten anything at all, so I was no longer in any pain, but I was in severe need of some nourishment.  I spent a few relatively pleasant days working on my laptop while being fed intravenously.  I finished my Physics of Computation project and did part of my final homework in the class.
   Eventually someone decided it was time to start feeding me again and sent the nutritionist by for a chat.  I agreed to start drinking clear liquids on the condition that I be allowed to choose them.  I did well on both clear and full liquids until the nutritionist decided that I should try a nutrient shake.  I was extremely reluctant to do so, since experience had taught me that nutrient shakes outrank even orange juice on the dangerous things to put in my body list.  She insisted that this drink was different, however, she had tried it on people with Crohn's disease and it had worked well...  The result was about nine hours of unpleasantness.  I actually considered this a good sign since I would normally have expected at least two days of unpleasantness; perhaps the meds were working.
   Thereafter I was given control of my own diet.  I started with very safe foods like soft meat and white rice, and everyone seemed astonished that I didn't drop dead on the spot.  I tried to explain to people that I hadn't come in with a catastrophic blockage.  Something was extremely messed up, but I wasn't completely unable to eat.  Nevertheless, the general atmosphere shifted to that of victory.  I was hopeful, but I was also determined not to check out only to return in a few days.  I began experimenting with less safe foods.
   At some point during this time I met Dr. Ma.  He swept in with a covey of followers, informed them (not me) that I would almost certainly require surgery, asked me if I had any questions, got annoyed when I actually presumed to ask one, and swept back out again.  This was shocking for at least three reasons.  First, it happened very quickly and without warning.  Second, I had had the impression that the hive mind had decided it could fix me through medication alone.  Third, I thought that I had already met Dr. Ma, and this guy was not him.
   I eventually determined that while my appointment cards for the clinic always said I was going to see Dr. Ma and Dr. Strickland, I had never actually seen Dr. Ma.  The young Iranian looking fellow who never wore a nametag and was bad with introductions turned out to be a resident named Dr. Barazza.  
   Round about this time I began to make some headway in sorting out the different teams of doctors.  I had learned the names of many of my more frequent physicians, and they appeared to divide nicely into three categories, general medicine, surgery, and gastrointestinalogy.  I was also getting to the point that I knew more about hooking up and running my IVs than some of the nurses liked.  The doctors seemed very pleased with my progress, and I was eating; there was just one little catch, nothing was coming out.
   Every day since I started eating again I had felt a little more fatigued and a little more distended, I forced myself to be optimistic since there was nothing I could do but wait to see the conclusion of my experiment.  The day before my scheduled release, however, I found myself feeling distinctly scuzzy.  Scuzzy is difficult sensation to describe.  In my case, it was the antithesis of "hungry" and "right" with a little "dirty inside" thrown in.
   That afternoon I got up and unplugged myself with the intention of going to the restroom.  I had wheeled myself halfway to the toilet when I suddenly felt as though all the blood had just been sucked out of my heart.  I sat down in a conveniently placed chair and rested a bit.  Then I stood up... or though I did.  Apparently what I actually did is slump forward onto the floor.
   My head made such a resounding thump that six people were already holding me when I regained consciousness a moment later.  I sat up, passed out, was held down, screamed, had a perfectly formed bowel movement, and finally just lay there unhappily.  It was soon decided that the immediate cause of my little episode was my blood pressure, which was hovering at something like 78 over 59.
   In an effort to determine the ultimate cause the doctors ordered a handful of tests.  They also decided to try and flush my system using two incompatible methods.  The first method required me to drink four liters of a diarrhetic salt solution called GoLitely.  The second method required me to get another NG tube.  I tried drinking the GoLitely, but there was already so much stuff jammed in the system that I couldn't keep it down.  I convinced the nurses to let me swallow the NG tube rather than having it put through my nose, but the next time I vomited it came back up too.  By this point the nurses were going crazy because someone had noticed blood in my stools.  In truth, it wasn't hard to notice.  There almost seemed to be as much blood as stool.
   At this stage my memory begins to lose focus.  That night was a blur of blood, diarrhea, vomit, and pain.  I got three new peripheral IVs and a total of six units of blood.  I was subjected to a seemingly endless battery of tests and was eventually dumped in the ICU.  Finally, after the last of the blood was in me, I was allowed to go to sleep sometime around 7:00 or 8:00am.  I woke up for a few seconds when Deborah came to check on me, but I was too exhausted to do more than look at her.  My return to the living was heralded by Becca, to whose voice I woke that afternoon.  I managed to retrieve the phone numbers of my family for Becca and then dropped back off to sleep.
   My mother was somewhere in Texas when she received Becca's call.  I had told her that I would be getting out of the hospital soon, and she was driving down to help me get settled back into my apartment.  So Becca calls my mom and informs her that I am not getting out of the hospital any time soon, I am, in fact, in the ICU.  Joyce says this didn't make her drive any easier.
   Not that seeing me in person was a great deal better.  I had lost about half of my blood in the last 24 hours, I had been kept up all night, and I was connected to three fresh peripheral IVs, a central line, a half dozen chest probes for the heart monitor, a finger probe, and oxygen.  I hadn't been weighed in a week but that last time I had been 116 lbs.  That night my hematocrit level had tested at something like 16 (normal range starts at 35).
   It was good to have my mom there.  I felt bad for dragging her down to New Mexico, but it was a lot more comforting and less exhausting to have one person who stayed with me all the time than a lot of people who dropped by occasionally.  Becca dispersed the news that I was in the ICU to my friends in Albuquerque with the caveat that I was too sick to accept guests.  I was touched by all of the people who came by, but it was just too much work to explain to every visitor what had happened to me.
   Over the next few days my condition slowly improved.  I finished some work for my advisor, Carl, and began to feel bad about taking up an ICU room when I was clearly not dying.  In fact, the theme of my hospital stay was getting to be painfully clear.  I was fine as long as I didn't eat.
   I looked into the possibility of living indefinitely off TPN, but it turned out not to be feasible.  I felt that I had shown conclusively that I was unable to eat, so the only option remaining to me seemed to be surgery.  Unfortunately the hive mind had fragmented again after my incident and it took a week for it to reform.
   During the interlude I became an uncle.  On May the 21st 2004, my sister gave birth to a healthy baby girl who was christened Marie Rose Kinsler.
   Eventually a consensus grew among the doctors.  I would have surgery.
   Someone had decided it was important to try to feed me again (clear liquids only) during the weekend, so I had to repeat the whole ordeal of flushing my system.  I drank a different kind of internal cleanser called Fleets-Phopho-Soda, and shocked my nurse (I had been transferred back to 5 South by this time.) by installing my own gastric tube.  I simply took the thing and swallowed it.  I was not about to let them try to install it.
   Thereafter, I spent two unpleasant days sitting around trying not to choke on my gastric tube and trying not to be impatient.  Aside from the tube I felt okay, but the flushing process wasn't going well.  We weren't sure how much was left inside me, but my body didn't seem to be divulging enough.  Still, there was nothing to do about it, so I was taken to surgery Wednesday night, May 26th.
   The first thing I remember thinking after surgery was, "I'd better go to sleep.  I really don't want to be awake for this."  Then I realized that I had already had surgery.  At about the same time the pain began to set in.  I spent the night in absolute agony.  My whole body would spasm painfully and I would strain against the rails of the bed while hoping fervently that I wasn't tearing open my staples.  I had been given a morphine button, but I didn't want to use it until I remembered what I knew about Morphine and Crohn's Disease.  Unfortunately I was in too much pain to focus on such a complicated subject.  Around 6:00am I decided that I had read that heroine users suffered from withdrawal symptoms very similar to those of Crohn's disease, and that this did not suggest that morphine would be especially dangerous.  Thereafter I rapidly became friends with the morphine button.
   Later in the day I took stock of myself and discovered that I had all the equipment I had on my first day in the ICU plus a catheter, a gastric tube, and a 15 centimeter stapled incision.
   The surgery was supposed to take less than three hours.  My mother informed me that it took six.  Initially the surgeons had hoped to perform the procedure laproscopically, but when they saw what they had to work with they opened me the rest of the way up.  One of the surgeons commented that cutting me open was like slicing open a newborn because there was no fat or muscle, just skin and organs.  After the surgery Dr. Terry just kept shaking her head and lamenting how dirty I was (the cleaning fluid had failed).
   They took out about 15 centimeters of terminal ileum/colon and my appendix.  That region was so corroded that they couldn't tell where the small intestine ended and the large intestine began.  The lab found that the piece of intestine removed included a stretch about 8 centimeters long where food had to pass through a hole 3 millimeters in diameter.  My appendix was described as an appendix-like object, and I had four fistula that together made parts of my intestines into self contained loops.
   When I asked Dr. Terry what my odds of complete recovery were she replied, "50 percent".
   After the surgery there was a period of several days spent in the sub acute care (SAC) unit during which we were waiting on my gut to wake back up.  (Apparently your intestines go into stasis when you operate on them.)  This is heralded by the passing of gas.  So I sat around wired like a Borg hoping to fart.
   A few days into my recovery the surgical team expressed satisfaction at my progress, and then astonishment when they discovered I was healing so well in spite receiving 120mg of steroids per day.  I was gradually disconnected from the equipment and eventually given liquid food.
   I have a couple of disturbing pictures from this period.  I had just managed to start walking again and I was 119.5 lbs.
   I'm still not sure what happened next.  I think I just got too cold while I was sponging myself off, but the doctors eventually decided I had an infection in my IV.  In either case, I started running a fever and eventually got pretty sick.  I was moved out of the SAC and I spent my first night in 4 South with a fever and back spasms.  The doctors were extremely worried because a fever and lower back pain are both signs of intestinal leakage/infection.  My TPN was discontinued on the off chance that my body had suddenly turned against it, and a new series of tests were scheduled.
   Personally, I felt like I had a bad sinus cold and couldn't get warm.  The scheduled tests required flushing, so I was taken off food and liquid again.  I was terribly cold and I kept shaking.  My body seemed to just be shutting down.  My mother finally convinced the nurses to bring me some heat packs.  I soaked blanket after blanket with sweat, but finally, a cartful of laundry later, my fever began to break.  Thankfully one of the tests required me to drink contrast and the nurse put it in cranberry juice so I wasn't completely deprived of liquid and sugar.
   By the time they came to get me for the CT Scan I felt weak but bearable, so when they asked me if I could stand up and walk to the stretcher in the hallway I did so.  I should have known better than to try this.  My nurse tech had just measured my blood pressure to be 54 over 29, but this particular tech was extremely incompetent (due in large part to her inability to remember what she was doing), and I didn't actually think I would be conscious if my blood pressure were that low.  Apparently it is possible.  I was even able to walk, sort of...
   I began to feel a bit woozy as I walked, so I grabbed my IV pole more firmly.  Someone asked me something, and I replied "It's getting very dark.", which it was.  I am told that I walked the remainder of the way to the stretcher and stood waiting for a moment, but my awareness snuffed out immediately after I spoke.  When I regained consciousness I was being held upright while diarrhea streamed down my legs.  I suddenly felt so weak and disgusting and afraid.  I kept apologizing while they cleaned me up and moved me to a chair.  My vision gradually returned, transitioning from black to patchy to speckled.  But even when the blackness had finally faded, everything looked two-dimensional and seemed to sparkle.  I remember trying to focus on what was wrong, but all the details of my vision seemed normal.  It was as though I still received the proper picture, but my brain was interpreting it wrong.  I thought the objects were flat, unreal, and sparkly.  My reason was likewise impaired.  I was able to comprehend that I was badly broken and I even understood that my brain somehow wasn't working right, but I didn't know why and I couldn't focus well enough to think about what ought to be done.  It's not that I was distracted by pain or anything else.  I just didn't have the mental faculty to reason any longer.  Nothing is quite so frightening as having just enough reason to comprehend that you've lost your mind.  Nothing is left over to consider your condition or plan a course of action.  There is only the knowledge that you are broken and blind fear.  Dr. Markham, one of my surgeons, came to examine me.  He tried to explain to me what might have happened and what they planned to do, but I don't remember what he said.  I couldn't understand him.  Plaintively, I kept voicing the most complex message I could formulate.  Over and over I said to Dr. Markham, "I don't know, but something is very wrong."
   That was another very bad night.  After my tests I was moved back to the SAC.  I was given a diaper and a catheter.  I was so weak that I kept losing consciousness.  The nurses, a doctor, and my mother watched over me.  The nurses pumped things into my veins, and my mother did her best to keep me clean and warm.  I was spared much of that night because I was too far gone to know what was happening.
   By the following morning I had stabilized, and the results of the scan were back.  There was no indication of leakage.
   Over the next few days I began, once again, to recover.  My surgery team declared gleefully that the surgery was a success and that my last incident had merely been an infection.  I was told they would be sending me home any day now.
   At this point the GIs decided to put me on Pentasa.  I argued against it, since I had tried the stuff when I was first diagnosed with Crohn's disease.  Not only had it not helped, it seemed to cause me pain in my legs.  They were determined, however, and I didn't think it would matter that much, so a full dose of Pentasa was added to my schedule of meds.
   It took me less than 24 hours for me to swell up like the Pillsbury Doughboy.  I awoke to find my face rough and pebbly with tiny acne and my knees so swollen that I was barely able to walk.  I called in my nurse and requested the doctors.  I convinced them to take me off Pentasa, and the worst of the side effects subsided within about 36 hours.
   It was at roughly that time that Dr. Markham dropped by and, in a very apologetic fashion, gave me the bad news.  My infection was caused by a strain of pseudomonas which could only be eliminated using IV antibiotics.  I would have to stay another week.
   I spent that week eating, sleeping, chatting with my mother, updating my webpage, and walking up and down the hospital stairs.  By the end of it I was sneaking out with my mother between antibiotic doses and getting exercise, as well as real food.
   On Friday they let me go.  I checked out of the hospital on June the 11th, 37 days after I had been admitted.

This account leaves out a lot, both good and bad.  My surgery team was wonderful both professionally and personally, my peripheral IVs typically took two and sometimes as many as four tries, I had some really great nurses and some really terrible ones, and I got to know my mommy.