Not to skip around too much, but I’m going to skip around. There’s still much to tell of my 27 day stint in an inpatient ward from my severe flare. Where I left last, I was in the two person room, getting used to not having a roommate, watching a lot of PBS, struggling to determine what foods I could stomach and going to the bathroom… a lot.
Being the optimistic person that I was, I would tell the doctors each morning when they rounded at 7am that I was feeling better. No, my symptoms hadn’t really improved, but I felt like they were. They’d ask, “how many times did you go overnight?” and I would always reply 5 – 6 times, because honestly I lost count. I spent so much time in the bathroom, I’d bring my phone to entertain myself. Gross but true. iPhone Euchre and solitaire became by best friends from 1a – 6am every morning. I never went more than three hours without checking my facebook. Sometimes I’d be so groggy in the restroom that I’d just rest my head on the platform attached to my IV stand. The platform is about waist high, perfect for a heavy head to lay on folded arms while I took a break from my explosive circumstances.

Arm Candy
I don’t really know why, probably a number of factors, but the doctors started entertaining the idea of letting me out around day 7 or 8. About a day prior I stopped attaching the heart rate monitor. The ECG stickies were *so* abrasive to my skin, and the monitor sounded an alarm every time I got up because I became tachychardic so easily. That’s malnutrition for ya. I also finagled getting the nurse to get me off IV fluids for a day or so. It felt so good being able to walk without that damn IV stand tethered to me. I remember the following day my roommate visited me, and I felt so great! As if things were finally returning to normal. My IBD symptoms had seemingly slightly improved, but more importantly I had way more energy and felt in general more like myself than any day in the past couple weeks, easily.
The following day I was slated to leave. They had printed my discharge papers and instructions and Andreas was set to come pick me up around 5p. Only I felt miserable. I felt so insanely tired that I couldn’t shower. I skipped lunch and couldn’t even pack up my things to go. I asked a nurse to take my temperature and it came to 102 F. I remembered I had a fever when a different nurse took my temp the night before, apparently they hadn’t done anything about it. Also, every time I stood up I became incredibly light headed. They evaluated me and diagnosed me as “orthostatic”, meaning my blood pressure got so low when I stood up that I became faint. I naturally have low blood pressure (thanks, yoga!) but this was beyond my own body. Then sh*t hit the fan when my advocates were wondering where in the process did 1) my fever go unnoticed and 2) did I go off IV fluids? It was obvious I wasn’t ready to leave.

If I remember correctly, somewhere around that point I needed another blood transfusion. I can’t remember if this 102 degree fever happened before or after said transfusion, but there was speculation that at least ONE fever was due to the transfusion. Transfusion drama, mayn.
So, what do they do when I spike a fever? More tests perhaps? Let’s run the numbers, baby! I swear, modern medicine is good for cutting and ‘scripting when they are able to diagnose a pathology. But if the source is unknown, they’re pretty useless. And up goes the cost of the technical portion of your hospital bill. So, like chickens running around with their heads cut off, they test every viable permutation in sight and we wait patiently for the results.
Data to these people is key, almost independently of anything else. It seems to be a crutch in some ways, especially for GI physicians that aren’t IBD specialists. For a couple weeks, my Potassium was low, so they made me take horse pills every day. One day, my Potassium was slightly high, so I was required to drink a binding solution to pull the extra stuff out. That binding solution caused diarrhea, yet they gave it to me anyway. Seriously? Considering my prior labs, I doubt the value of Potassium was that high, but it’s moot at this point. I drank the delicious medicine cup and embraced a day that sucked for a new, different reason. Now I have a terrific tale of it all. All I can say is that I’m proud to be a part of the generation that actually questions the calls made by doctors. Especially in a situation where one of the doctors, the attending for two weeks of my stay, readily admitted that he hadn’t had much experience with treating cases like mine, so the team was just going by what was recommended in the published literature.

You're guess is as good as mine!
He even went so far as to continually mention to me that he spoke with “his buddy”, who is an IBD specialist at Penn. If you’re consulting another physician, please don’t refer to him as your buddy. Spare me that, bud. It makes me doubt his credentials by default. Though I did appreciate his honesty through this, I admit that my weariness of the physicians and the drugs might be what took me so long to show signs of improvement in the first place. Even if the treatments helped, I knew that nothing they had to offer would be curative. I could no longer rely on external forces to remedy an autoimmune problem. It’s always been about me, my mind and my body.
Interestingly enough though, for how much data my attending physicians relied on, when it comes to my continued care, the GI doctor I check in with mentioned that she cares more about how I’m feeling than the numbers. This was in relation to my lipase and amylase levels, measured to reflect whether or not I’m experiencing the onset of pancreatitis. Since November I have been taking Imuran, along with it there is an increased risk of pancreatitis, especially since I have had acute pancreatitis in the past (April 2010). It was interesting to hear someone admit that the numbers sometimes “don’t tell us much”. I wonder what it took to permit them to arrive to that conclusion. How much following of the numbers did it take before they actually had to listen to the patient.
Once they decided that I wasn’t going home that day, they again took a urine sample, stool sample, the works and sent them off to the lab. They ran the same tests they ran my first night in, made all visitors wear the buttercup tea gowns again. But this time, they moved me to a new room, one that I like to think of as the corner VIP suite. A private room. In the world of 7th floor inpatients, look, Ma – I made it.
That, or they recognized I was a highly sick patient in it for the long haul.