So I had another post all ready to go up, but then I was hospitalized again last Monday night due to another bowel obstruction and a few things came up during that visit that I thought were a bit more important for the time being. I can’t really say that this hospitalization came out of the blue, as I unfortunately missed my weekly dose of Humira at the very end of January because my husband and I were stuck in Boston for five extra days due to the blizzard that struck. We had flown out there for the annual memorial service for my father-in-law, and at the time we left, no storm had been predicted for that weekend. With my pills, I normally bring a few extra days worth in case of emergency, as I did this time, but traveling with injectable medications that need to be refrigerated at all times is a major pain in the ass. Specialized kits tend to only keep the medication cold for a limited amount of time, and airlines refuse to store them for you in-flight due to the fact that they could be held liable if something were to happen to the medication. I understand this from working operations in a hotel for many years, but it doesn’t make it any easier. I did my shot the night before we left and I was set until our return five days later. Or so I thought.
Once we realized we were going to be stuck for five days longer than planned due to all the cancelled flights and airport closures, I phoned my doctor back home to call in a couple of days worth of my other medications (in pill form) to the local pharmacy in Boston. Injectable meds are dicey though, in my experience they are regulated more than heroin. Go figure. Couldn’t get anyone to ship one Humira pen to the pharmacy for me, so I was out of luck. At that point, it was essentially a matter of waiting for the other shoe to drop. Crohn’s doesn’t like to be ignored, and my body got its revenge just a week after we had returned home and I had resumed my normal medication schedule.
Monday afternoon, something didn’t feel right, and by 5pm as I was wrapping up my day at work, the abdominal pains and distension started. I was home an hour later and drank some grape juice and took both dogs on a long walk, as that sometimes does the trick to get things moving. Once returned, I lay down with my heating pad and waited for my husband to get home from work. Things didn’t look good. He took one look at the glass of grape juice and my heating pad when he walked in the door and knew his day was about to get a lot longer. I held out until about 8pm, at which point the nausea was becoming severe, before I threw in the towel.
Quickly grabbing my always-packed-just-for-this-purpose overnight bag, we headed to the ER, where there was luckily no wait that evening. The ER doc on staff that night wasn’t one of my favorites, but she was a bit better this time around, having seen me a few times before. The usual trifecta of Zofran, Dilaudid and contrast solution was ordered, and then the ER nurse informed me that, but of course, they would have to try and find a vein as well, as the IV contrast that is used for a CAT scan cannot be injected through a standard port, only something now referred to as a “power port”, which is specially designed to handle the type of pressure administered with the contrast without risk of blowing the line. This was not news to me, as it has happened the last few years when ER visits have come up, but each time it’s like getting hit in the face with a shit sandwich. My port has been in for almost eight years now, and this “power port” option wasn’t a thing back then. I guess I kept hoping my rate of ER visits would slow down and it wouldn’t be necessary to look into having my port “upgraded” but apparently it’s time. I’ll be mentioning that one to my hematologist at my visit next month and can only hope they’ll agree to do it, as it’s kind of a necessity for me at this point, given how often I require CAT scans for obstructions.
Anyway, normally this sucks and they give me some pain meds and I put on my big girl panties and suck it the hell up while the poor nurse stabs at my hand repeatedly, trying to find a vein that won’t collapse. The other thing about IV contrast is that they only like to use veins in your inner arm for this, not the hand. I don’t have accessible veins there anymore, and the last few times, I’ve been able to argue my way into an IV in the hand to keep us all sane. It wasn’t working Monday night. The nurse just kept shaking his head at me and I wanted to claw his eyes out I was in so much pain. I looked at my husband and basically asked him to keep me from killing the poor guy who was patiently rubbing, patting and smacking my arms now, trying desperately to feel for a vein that wasn’t going to appear.
After a few minutes of this (and a few minutes after the dilaudid had kicked in and at least calmed down the incredible pain I was in), the nurse told me he had found a suitable vein and I turned my head and waited. Inserting a needle into a vein is one thing, but digging the needle around inside one’s skin after it’s already been punctured is entirely another. It felt as if he was using a needle the size of a carpenter’s nail, and I yelled mercilessly. Miraculously, it only took three more attempts before he was in (I feel a “that’s what she said” joke coming on, but I’ll leave it for now), and then it was time for the go-go juice (the contrast solution you ingest). I can’t really complain about that too much; while it tastes far from pleasant, nothing is as bad as chugging barium, so I was able to stomach it.
We killed time for the next hour or so, my husband occasionally wandering into the hallway to chase down a nurse when my pain levels went through the roof again. They switched over to Fentanyl at some point, and that kept things in check a bit more. After radiology ran the CAT scan, the doctor returned to give us the results about a half hour later.
“You have an obstruction”, she said. No shit, lady.
By this point it was about midnight, and she recommended a hospital admission until the bowel obstruction would clear, which I expected. As I said, I always have my hospital bag at the ready, so I had all my basic supplies. The pain came back, now worse than before, and I remember George standing over me holding my hand while I was shaking violently and uncontrollably before they hit me with another dose of Fentanyl and I was basically out. We made it up to the room just before 1am, and the night nurse on duty came in to ask me all the same questions I had answered in the ER. This process has always frustrated me and continues to do so. Why can’t the ER send this information upstairs? Why am I answering questions as to whether or not I am a smoker while I am twisted in pain, gorked out beyond belief, and nauseous to the point that I was ready to spew at any given moment? Dude, if you’ve got something for me to smoke that will fix that shit, PASS IT OVER!
Anyway, my husband got me settled and left, and I spent the next five hours moving from the bed to the bathroom, vomiting like Linda Blair. They asked me about putting in an NG tube, but I begged for one more hour. As horrible as I felt, nothing is as bad as that tube. Sometime after the morning blood draw at 5am, I fell asleep, and woke around 7am when I heard my cell phone ringing. I always, ALWAYS turn the ringer off on my phone in the hospital for this precise reason, for the fact that someone who has never spent a hellish night in the hospital will inevitably call bright and early the next morning with the well meaning question “How are you feeling?” George must have turned the ringer back on. I answered it, spoke five (likely foul) words and then threw it on the floor. Two hours later, I woke up in pain again, and called the nurse for my dose of Zofran and Dilaudid. It was time to get the ball rolling, regardless of how little I had slept.
Once the meds hit me I felt a little better, and I spent about 20 minutes in the bathroom in various awkward positions as I brushed my teeth, washed my face and cleaned myself up. I changed into my sweatpants and a t-shirt I had brought with me and grabbed my IV pole for a few laps around the floor. That is one thing you must do, regardless of how much pain you are in from an obstruction – you must walk. The pain medications can slow the system down even more, so walking will help counteract that a bit, and gets things moving in the right direction.
Sure enough, about two hours later I was awakened from my nap by a familiar sensation in my stomach. I headed to the bathroom and waited, where I was rewarded with what my husband and I now lovingly refer to as a “code brown”. I knew he was waiting for this news, so I texted him promptly. He phoned me a few minutes later, telling me he had taken the CAT scan results from the previous night and had them couriered over to the surgeon I had consulted with a few months before in the event that the blockage didn’t clear on its own, so the surgeon would be prepared to operate if needed. He’s on top of his shit, that one.
I left my room and cruised over to the nurses station to inform my R.N. that things were once again flowing in the right direction, and asked if she could call the doctor to see if he could remove the NPO order from my chart so we could get some clear liquids into me and see how I tolerated them. It was 11am by this point, so I figured at this rate I could be all set and out of there by 5pm if all went well. The nurse agreed, and popped her head in about 20 minutes later to say that the doctor wanted to see me in person first, and that he should be in to see me shortly. Okay, no problem.
I am a pretty reasonable person, all things considered (though my husband will dispute this), and gave him until 1pm before I went back out to the nurses station. I asked if she could contact him again to get the NPO order lifted, just so we could start clear fluids. He could come by anytime later on, see I was doing fine, and progress my diet from there. She called him again, and he gave her the same answer. By this point, not only was I pissed off, but I was hungry, thirsty and cranky….I was “hangry”. I retreated to my room to rest and stew for a bit more, but by almost 2:30pm, I couldn’t take anymore. Fuck this. I grabbed my IV pole and cruised down the corridor, looking for the pirate’s booty, the fridge tucked in a corner of one of the nurses stations stocked with things like popsicles and water ice. They had moved it behind a locked door since my last visit, the sonsofbitches. Undeterred, I made my way to the waiting area by the elevators and made myself a cup of plain hot tea. Walking back to my room, I sipped it slowly, and as I approached the door a man wielding a stethoscope appeared next to me.
“Who approved that?” he asked, glancing at the cup of tea in my hand.
“You should have, four hours ago”, I responded, done with all niceties as we entered my room together.
He began to run through the symptoms in my chart, and stopped when he saw that my medication list included Lomotil, an anti-spasmodic. He asked how long I had been on it, and when I replied almost eight years, he looked like I had just told him I had three tits.
“So you’re telling me that you’ve had chronic diarrhea for the last eight years?” he asked me incredulously, his eyes wide.
Oh, this is bullshit, I thought to myself, smiling sweetly as I looked at him knowing my next phrase was going to knock him clear off his chair, since it was obvious at this point that he hadn’t fully read my chart.
“No, I’m telling you I haven’t had my colon for the last eight years”, I responded, watching a blank look come over him ever so briefly, before he attempted to breeze past that and convince me that he had known all along. He continued on in a monologue, telling me we should start clear fluids that evening to see if I could tolerate them (genius!) and then that we could progress to a full liquid diet in the morning and look at a possible discharge then.
Beating around the bush has never been my strong suit, and having nothing to eat or drink in over 24 hours, not to mention only about 3 hours of sleep, I was in somewhat rare form.
“How about this?” I proposed. “Since I’ve already had some ice chips and tea over an hour ago and feel fine, I’ll order full liquids now, since there’s really no reason to wait. You can write the discharge papers and leave them with the nurse, and that way if I’m tolerating everything fine this evening, I can go home.”
It wasn’t really a question.
He agreed and just tried to get the hell out of there before I could piss him off even more. I waited about 15 minutes and stopped by the nursing station. “Did he clear me for liquids?” I asked the nurse. She looked at me apologetically and told me he hadn’t relayed any information to her yet. I informed her of our conversation, she smiled and called him to confirm this. Once he had, I asked her to contact the dietician as well. It was go time, no more delays. Mama was hungry.
Back in my room, I phoned the dietician’s office and ordered what I considered a restrained meal of rainbow sherbet, tomato soup, a yogurt smoothie and chocolate pudding. When it was delivered 20 minutes later, I inhaled it as if it were my last supper while watching “Sex and the City” reruns on TV. Tired and finally sated, I made one more trip out to the nurses station to ask my RN to de-access my port before she left for the day, as the last few times when I was discharged late, not many of the staff knew how to do it. They were running all my fluids through the damn IV in my arm anyway, so there really wasn’t a need.
She stopped by my room about 10 minutes later and quickly got me disconnected, and I fell asleep, woken only when my husband walked in the room a couple of hours later. As I still felt fine, I decided it was time to go home, and my RN was quick to bring over my discharge instructions and remove my IV while my husband packed up my things. Fifteen minutes later we were home, and I passed out in bed almost immediately and slept until the following morning.
The reason I bring up my interaction (or lack thereof) with the doctor on this particular visit is not to diminish his knowledge or authority in any way, but to highlight the fact that since the inception of doctors known as “Hospitalists”, I have had more issues with my hospital stays than I can ever remember since the time when your own doctor or specialist personally came to the hospital to see you to decide on your treatment and possible discharge. Hospitalist doctors go to medical school and often complete their residencies in general internal medicine; some go on for additional training for hospital-specific care. I’ll be the first one to say that, as someone who has a parent that is a Doctor, I completely understand why they would rather have this system in place than having to sacrifice what little sleep and rest they do get to run to various hospitals every evening to see their patients after regular office hours have ended, not to mention always being “on call”. It’s insane. To be able to delegate “making rounds” in the hospital to another doctor who solely does this for a living makes sense, at least from the hospital and physician’s point of view. When it comes to the patient though, I don’t necessarily know that this is for the best. For many people in good health, a hospital stay is a rare occurrence caused by an accident or random illness, and for them, the care provided by a Hospitalist is probably fine. However; when it comes to those with chronic illnesses, the hospital stays are often more frequent, the medical history is much more extensive and there are a number of confounding factors that are better addressed by a specialist, at least in my opinion. While my GI doc will often visit me in the hospital on his own accord because of the complexity of my illness and our longstanding relationship, some patients don’t have this luxury, and with this last hospital stay, my GI happened to be out of town. It would have been nice to have another GI from the office stop by to talk to me, as then I probably wouldn’t have had to wait almost four hours for an NPO order to be removed once my system had started functioning or explain the fact that I’ve been on Lomotil for eight years because I don’t have a colon. My GI doc knows me and has seen me both healthy and less so, and therefore has a “control version” of me by which to compare my current condition to. A Hospitalist does not have that point of reference, nor the time, I’m sure, to read through volumes of a patient’s medical history before stopping in to see them. And then let’s talk about bedside manner for a moment, as I am a veteran of the hospitality industry myself, and this is something that is important not just to me, but many patients. By its very nature, a Hospitalist position isn’t designed to really develop any kind of relationship with the patient (and no, I’m not talking about the dreaded “transference”) and instead operates at a distance and a level of disconnect that (in my opinion) would tend to attract the very sort of individual that doesn’t have the appreciation for patient relationships or interaction very much at all. And is that really the sort of person you, as a hospital, want to hire? Is that really the sort of person you, as a patient, want caring for you as your doctor? When it’s a specialist you’re going to see, if you don’t like them for one reason or another, you have the option to search for another physician. You don’t have that same opportunity as a patient in the hospital, at the mercy of whomever is on duty. Sure, someone doesn’t need a shitload of personality to graduate from medical school, and some would argue that the education doctors receive there is almost geared toward removing the empathy from their students so as not to let it cloud their judgment or decision-making. Again, I get it. But is it really so unreasonable to expect a little personality, a little empathy from someone who spends all day dealing with patients in a hospital setting? Is it possible that the hospital should sponsor some sort of quarterly or at least annual training centered around hospitality and bedside manner for doctors holding this position? Should regular rotations through specialized areas such as gastroenterology, etc. be required, given that due to the very nature of chronic diseases, you as a physician would be seeing patients with these on a more frequent basis in a hospital setting than you would say, someone who just happened to be in a car accident? Is it even realistic for a patient to expect that?
Regardless of what the answer may be, it’s pretty clear that our current hospital system is broken on many levels, from the perspectives of both patient and physician. Patients want to see someone who knows them, or at least is familiar enough with their disease, current condition and emotional state to make a connection and not make them feel like a number. Physicians both need and deserve to be able to sleep on at least a semi-regular basis to keep them at optimum functioning levels for making the often life-and-death decisions they are faced with every day, and simply shouldn’t have to spend hours every night running to the hospital to ensure their patients are receiving the best care. I don’t envy their position in the least. There has simply got to be a better way.