Is pouchitis even a real word?

After days of steady progress, Caren has developed pouchitis. When I first heard it, I thought it was like one of those words Scrabble players insist are legitimate words in the English language to hit the triple word score on me. It sounds just plausible enough to make me think about it, but every ounce of logic is screaming, "She's trying to cheat again!"

Well, it turns out, pouchitis is a word, although it's entirely meaningless unless you are one of the select few that have a pouch. The pouchless millions of us out there simply get gastritis or gastroenteritis or some other delightful, lower GI tract infection. Caren ended up with an infected J-pouch. Apparently it's a fairly well documented complication of the surgery. Somewhere close to 75% of J-pouchers (that may actually be a completely made-up word, but it sounds just about plausible in context...right?) end up with pouchitis at some point. It's more common after recent surgery. Some patients develop what they call, chronic pouchitis that requires almost continuous antibiotic therapy to keep it in check. Sounds like fun huh?

In rare cases, the chronic pouchitis fails to respond to the antibiotics and the pouch must be by-passed in favor of a permanent ileostomy bag. Wouldn't that be fabulous? There is nothing about Caren's current infection to suggest that it's anything but a run-of-the-mill pouch infection that will resolve after 10 days of Cipro. We'll see. She's been on the antibiotics for a few days now. The discomfort is gone, but the fever still pops up every afternoon/early evening.

I remember a doctor, I'm not sure which one now, telling me that it's not uncommon for certain symptoms to present at predictable times of day. It has something to do with cyclical fluctuations of natural Cortisol levels in the body. Everyone has a personal rhythm and when the levels hit their low point, around late afternoon/early evening for most of us, your body is less able to keep infections and other chronic ailments at bay. So every day between 5pm and 7pm, Caren develops a low-grade fever. She can feel everything start to ache and within minutes, she has the chills. I know my own sinuses flare up either late in the afternoon or very early in the morning. My own Cortisol cycle must dip again between 5am and 7am.

The best news we've gotten in the past two weeks is that her surgeon has returned from his well-deserved vacation. Dealing with a primary care physician, at least our PCP, has been a nightmare. No offense to any of the docs that may still be reading the blog, but we had more trouble getting Caren's coumadin doses monitored in the last 2 weeks than Obama had getting "health care reform" past Congress!

Fighting with the lab, fighting with the nurse, nothing went smoothly. Caren actually gave up and never followed up with him after her last two blood draws. She just maintained the same dosing regimen and hoped for the best. I made my quiet protests, but what can I do? The guy wouldn't call us back, his nurse has her PhD in running interference and not being helpful (I think I mentioned her in previous posts), and when we get through to the doctor, the lab has suddenly decided that the order that has been run STAT for 6 weeks is now routine and the results won't be available until tomorrow...at the earliest! It boggles me that, the country that supposedly leads the free world, can't develop an idiot-proof means of communicating critical medical information. How about a package to stimulate some doctors to give a damn again?

I teach my Paramedic students , training to enter what is arguably one of the lowest rungs on the health care ladder, that if you want to earn the respect of your patients, you need to find and address what is most important to them. It may be their ailment, their injury, their child, their pocketbook or maybe even their pomeranian. But if you fail to figure out what is most important to them, they will never trust you fully, and without that trust, you will not get their respect.

The power of the doctor-patient relationship has always rested in the absolute respect that doctors have historically commanded. Respect for the knowledge and the training required to achieve it, and respect for the responsibility assumed when caring for the sick and injured. However, at the end of the day, respect must still be earned, and if physicians continue to take it for granted that their patient's respect them, that respect will disintegrate.

Medicine is a human-service industry, and like a restaurant with crappy waitstaff, patrons will go elsewhere. I don't know if my doctor just has too many patients, or maybe he's lost his zeal for the job, or maybe he's more interested in which ER nurse will be his next conquest. Regardless of the reasons he can't seem to figure out what's important to his patient(s), he certainly has a limited number of opportunities to prove to me that he and his staff really care about me and my family.

Another week, big improvements!

We've come quite a way in the last week. Last Thursday, we spent the entire day at the doctor's office looking for mysterious infections to explain the pain and discomfort Caren couldn't seem to shake; this Thursday, Caren had dinner cooking when I got home from work! Considering that last week walking to the bathroom was still a death-defying event, cooking a meal is our equivalent of walking on the moon!

After all the running around last week to get the CD-Rom with Caren's CT Scan in the hands of her surgeon, he still didn't get it until Monday afternoon. I'm so glad I paid the extra for overnight shipping! We had our suspicions that we were not dealing with an abcess, mainly because by Sunday she had been on the Levaquin for 5 days and was feeling considerably better, but it was still good to have the surgeon offer his assessment of the scan.

Most of his concern regarding the presence of an abcess disappeared when he read the Radiologist's report which stated that: "...the small and large bowel appear normal." It was apparent fro mthe get-go that this guy had no clue what he was looking at! I'm really not sure which part was worse, the fact that he thought the small intestine attached to the rectum was "normal" or the fact that he "saw" a 4.5 foot long organ that didn't exist. If a highly trained, experienced medical professional can see a phantom colon, I'll stop wondering immediately how sightings of Big Foot and the Loch Ness Monster continue to occur! Further proof that reality is based primarily on perception (not fact) and people see what they want to see.

Caren still can't lift the kids, but in many ways, life is returning to normal. We'll probably have at least one more week of help during the day; maybe next week she'll give it go on her own.

The only outstanding medical issue we can't seem to resolve is her clotting factor. It's been a month now and we still can't get her coumadin dose therapeutic. Her surgeon has been altering her dose every Tuesday and Friday since she left the hospital with limited success. I honestly don't think we've had two consecutive sets of lab values even close to each other. Now, with her surgeon on vacation out of the country for 2 weeks (oh, I know, great timing right?), her primary care physician has agreed to follow her INR. Not that he isn't capable of reading the lab values and making up a dose for her coumadin, which, by-the-way, is anything but scientific. As far as I can tell, it's completely made up on the fly. However, a PCP is just not used to contacting patients at home in a timely manner, or maybe it's just our particular primary doc. Which brings me to my last thought for the day.

Our primary care physician has a nurse that works for him as his primary assistant. On one hand, I've never gotten any "warm fuzzies" from her, on the other hand, she's never been outright rude to me either. My best guess is that she's one of the brilliant clinicians that got into medicine without the benefit of actually liking people. It may sound preposterous, but there are plenty of medical providers that manage patient's without the slightest degree of empathy. Who knows what motivates them, but I can assure you it's not the ceaseless plight to make people feel better! So this nurse clearly falls into this category, maybe she's the President of CWC, Care without Caring! (Note: I do not have any knowledge of this group actually existing, although if it did, there would be no shortage of charter members)

Caren had her blood drawn yesterday morning and was waiting all day for the doctor to call with the result and subsequent dose for her evening coumadin. All of her lab work is entered "STAT", meaning the results are available later the same day rather than a month later. She waited until after 4pm, knowing that the office would close at 5pm and the entire staff, docs and all would disappear until Monday. When she called, she had the pleasure of playing 20-questions with the CWC President, before having to say, "There's no need to be RUDE!" After that, Caren got her dose and the conversation ended rather quickly. It just confuses the hell out of me that someone would go through all the training, pass all the exams and choose to work in a people-oriented, service industry without even the slightest inclination to be polite on the phone with a patient. Maybe she should move to the OR where the patients are unconscious!

Are you kidding me?

In an eternal effort to eradicate every possible dull moment from life, Caren spiked a fever on Tuesday evening. In all honesty, her health has slowly declined since seeing the surgeon last Friday. At first we thought is was just the harrowing trip to Mt. Sinai that had wiped her out.

After nearly 8 hours of traveling for the follow-up appointment, she spent almost 48 hours recovering. Saturday and most of Sunday last weekend was a complete wash. In retrospect, we now know that it was an infection getting a handhold and carefully deciding where to set up shop. She continued to feel run down through Tuesday when it really hit the fan.

There I am proctoring my summer class' final exam and up pops an innocent IM from Caren: "I have a 101.5 fever." Here's where my initial dismay over the fact that we have signs of an infection turned to near rage as I find out that the symptoms of her urinary tract infection never actually went away! Oh yeah, I can see you sitting out there, rocking back in your chair saying, "what does he mean, the symptoms never went away?" Well, let me tell you that I was as surprised to get that tid bit of information as you are! Caren, staying true to the stereotype that medical professionals make TERRIBLE patients, decided that the whole, lack of urinary output, pelvic discomfort and painful urinations, WASN'T THAT BIG A DEAL!

Ok, I'm past it, just needed to get that out of my system...thank you all for receiving my rant, I'm better now. Oh, wait a minute, I knew there was something else that fired me up about the whole situation...I had to threaten to call the surgeon my self before she agreed that informing him of her symptoms would not be considered annoying. She didn't want to pester him! Somehow, I thought that, maybe, just possibly, he might be interested to hear that a post-surgical patient, who happens to have a single kidney, was experiencing signs and symptoms of a urinary tract infection, including a fever higher than 101! On a side note, I've recently learned that 101 is some magic number in medicine. A fever less than 101 to a doctor is kind of like a solid "C" student to a teacher, their there, but certainly nothing to write home about, but I digress.

The bottom line is that I was right! (There I said it) Caren called the surgeon and within the hour was on Levaquin. We hoped that that would be the end of it, but oh how wrong we were. Yesterday afternoon, after 2 doses Levaquin and absolutely no improvement, I convinced her to email him and see if she should see her primary care physician up here. He called a short time later and gave the OK.

Fortunately, we were able to get a 9:30 appointment this morning; fortunately because of what was potentially discovered and for how friggin long it took! At 9:30ish, Caren was peeing in a cup at the lab, figuring that a UTI would be proven, beyond a shadow of a doubt, the Levaquin would do it's job, and soon we would be back on the road to recovery. After leaving her deposit in the lab, we reported to the third floor of what can only be described as a colossal medical associates building. I should remind everyone that Caren hasn't seen her primary care doctor in a while, so we knew we were going to have to catch him up on the latest developments. If only I could have gotten a picture of his face! It went something like this:

"So I had a colectomy last month and instead of spending 5 days in the hospital, I was there for 11. And while I was there, I had a massive urinary tract infection, that they put me on IV Zosyn for. Oh yeah, did I mention that they found a clot in my hepatic portal vein?"

I was watching his face at this point in the interview and his eyebrow nearly jumped off his face!

"And when they did the initial surgery they saw a polyp on my gallbladder and they took that out too." I think he actually shuddered, as in he had a momentary loss of voluntary muscle control. But, being a true professional, he recovered well and, without missing a beat, turned to me and asked, "How have you been?"

He was good, he took it all in stride. It helped that I've known him since I was a teenager and he is well aware of our medical backgrounds. He reminded us that coming into the situation at this stage means that he has to rule out EVERYTHING! And so the testing began. We went back to the lab for urine cultures, blood cultures, a CBC, I think they even stuck a swab in her belly button to be safe. I was afraid they were going to attempt to swab me, but my "Don't Fuck with Me" tattoo must have been visible through my flowing locks of golden hair (hey, a guy can dream right?), so they left me alone.

In addition to having every surface of her being, both inside and out, combed for a microbial presence, he wanted to have a CAT scan done to rule out anything in the abdomen. So, after spending two hours drinking two humongous bottles of "Creamy Vanilla Smoothie" barium, that, incase you were wondering, tasted NOTHING like cream, vanilla or smoothie, Caren got her scan.

About 45 minutes later, we're in an exam room 2 floors up and I hear him say something about abcess and my head started spinning. I remember thinking, can this get any worse? The Radiologist saw what he thought could be an abcess in her mid-pelvic region; the exact area where she continues to have pressure and pain. I wanted to thank him personally for being as vague as was humanly possible, but it was probably safer for everyone that I steered clear. Our primary care physician told us that we needed to see a surgeon, but we could choose whether to see a local doctor or go back to our original surgeon. We were actually able to get her surgeon on the phone from the office and let him know about the findings.

Clearly he wasn't happy to hear the words "abcess" and "mid-pelvic area" spoken together regarding one of his recent surgical patients. He did mention that Radiologists often have difficulties reading scans of J-Pouch patients, and it wouldn't surprise him at all if the "abcess" turned out to be part of Caren's newly re-arranged internal parts. He was cautiously optimistic when he instructed us to overnight the CD-ROM with the CAT Scan results to him. He wanted to see the scan personally before he jumped to any conclusions. So we wait. Caren was researching what they'll do if it is an abcess, but had to stop when she read about drainage tubes in places not meant for drainage tubes.

He'll have the disc by noon tomorrow and we should know more by later in the day. When we know more, you'll now more. Sorry for the lengthy post, there was a lot to report and the kids are at my parents house tonight. When given a topic and the time, I write. I'll update everyone tomorrow.

Catching Up

It's been about a week since I posted anything. Not surprisingly, it was my first week back to work. I had actually forgotten just how busy real life is! Fortunately, Caren's mom was able to get some time of of work to spend the week wrangling the kids and keeping tabs on our patient.

The week brought minimal, but certainly not imperceptible, improvements for Caren. She spent more time up and around than she did lounging in bed, that's for sure. She's still a little slow on her feet; to get an idea of her gait, try to imagine someone doubled over with gas cramps trying to walk across a bed of hot coals. She's kinda crooked, but up on her toes, with a bit of a waddle. I only dare offer that image because I know, beyond a shadow of a doubt, that if she was to read it soon, I can out run her with one leg tied behind my back...and I have a very comfortable couch!

Her diet has continued to diversify. We haven't gotten too adventurous, but she did eat some salad yesterday. This was the first green, leafy meal in a decade. For the most part, we focus on simple, tasty meals that are easy to wrap up and re-heat. Her appetite ranges from a few bites of pasta to a whole cheeseburger and sweet potato fries (Ok, I realize there is nothing simple about that meal, but it was special request. Who am I to deny a woman a cheeseburger and fries?).

Her INR (clotting factor) has continued to be about as stable as Mel Gibson's long-term job prospects. We're working with the surgeon to find a dose of the Coumadin that gets her therapeutic without turning her blood into cool-aid. But, after our follow-up appointment with him yesterday, he seems to think she's well on her way to full recovery. His actual words were, "You look great!" Patience and perseverance will get us to that all important moment when we actually feel like it was all worth it.

I'll post some more on the follow up appointment next. I captured the highlights of the time with the surgeon in that single sentence above. Unfortunately, the trip was anything but uneventful.

Just curious...

I know we're out of the woods with Caren's recovery, so I'm curious how many folks are reading along. If you're still checking in, drop me a comment or an email (seth.r.goldstein@gmail.com). I'll probably keep writing to preserve my own sanity, but it's nice to now who the audience might be.

Ongoing Recovery

It's bee na few days since I had the chance to update everyone. Caren is getting a little stronger everyday. It's become clear that the recover is going to be measured in weeks and months, not days and hours. Every day that she can do something she couldn't do the day before is a good day. Some of the victories are as little as staying awake for more than an hour at a time or walking from the bedroom to the kitchen without a pit stop.

In the last 24 hours we've been able to add some protein to her diet, baked chicken last night, and she was able to get up and shower this morning without almost blacking out. Since we left the hospital, her blood pressure has been pretty low and every time she stands up, "the world starts to go black." I don't believe we've had any actual loss of consciousness, but we've come close a few times.

The chills and hot flashes seems to have abated also. She hasn't mentioned them in a couple days, so either they went away all together or they're at least to the point where they're not as bothersome. I really think the issue was her fluid level. I don't know if it was the blood loss post-surgery, the blood thinners, or something else entirely, but ever since we've been making a concerted effort to increase her fluid intake, the symptoms have started to get better. I have no idea how much water and juice she's drank in the last two days, but I'm willing to bet it would be measured in the gallons.

Her clotting factors are still not where they want them so we've been messing with her medication doses to try to get the right combination. We haven't been making it up as we go along, the surgeon calls us every Tuesday and Friday after he get s copies of her latest lab values and tells us how to tweak things. We'll see how it looks on Tuesday.

Our next visit with the surgeon is next Friday, the two week follow up. It'll be odd returning to the scene of the crime. I'm not sure how I'll feel walking around that neighborhood again. I started to feel like I was living there by the end of our stay. I doubt it'll feel like much of a homecoming though.

Everyone else up here is good. The boys are great, but oh so much work. Sadie, the puppy, continues to be the most work of them all though. She's a good girl, just such a puppy, and damn near 50 pounds now to boot! I nearly came unglued the other day when, after a morning that started at 5:05 AM and was ripe with screaming, crying, hitting, kicking and did I mention screaming? I was changing Sam's second, absolutely disgusting poopy diaper of the morning, when Sadie decided she was not getting enough of my attention and grabbed her rubber, chewy bone. First she tried to put it in Sam's mouth, which her was not happy about. Then she sat on his head and tried to put it my mouth (let me remind you that Sam is on his back with a load of crap nearly oozing out of his diaper on to the carpet). I pushed her away from Sam and told her to go lay down, a command she hasn't quite grasped yet, because she obviously confused my order to go elsewhere with the phrase "Drop that bone right in the pile of poo between Sam's legs." A common mistake.

So there I am, one hand holding Sam's ankles in the air, the other hand holding a poop-laden wipe, Sadie is sitting next to me full of pride, the bone in actually standing erect with one end buried in Mount Sampoopious, and now Sam is screaming because he has no idea what the hell is going on. I can look back on that moment now and smile, even chuckle a bit at myself. I assure you, there was no laughter in the room at the time. I started growling, actually growling. I don't even think I was capable of coherent speech. Fortunately, Sadie got the picture and disappeared. I have no clue where she went, but it was the smartest thing she's done in her short time on this planet. Sam just lied there and looked at me between his knees with this "please tell me this is almost over look". I left the bone in place and finished wiping the shiny, white butt hovering over it. The diaper, load of crap and bone all went by-by in one package. Sam got a fresh diaper and on we went.

That was the moment where I was able to say, "it can't get much worse." I think that those times are important. It was almost a turning point for the whole week. I f I was able to get through the kicking, screaming, tantrum-full, Mt. Sampoopious few hours, I can handle just about anything coming down the pipe. I'm not saying I handled it gracefully, I think my voice hurt from yelling so much, but we got through it; no one got hurt (well, at least no permanent injuries), no one seemed to hate me too much, and the house was still standing the next day, what more could we ask for?

Limited Tolerance meets The Zoo.

Caren has ventured past the bedroom door today. We've observed her wobbling to the kitchen and living room a few times today. It's so great to see her up and around, even a little bit. SHe tried to come out and visit with the boys for a few minutes this afternoon, but I seriously think it was sensory overload for her.

She wandered out and crashed on the couch. The twins pounced immediately. They just wanted to be close to her, but couldn't take a break from the wrestling match they'd been engaged in for the preceding 10 minutes. All in good fun, just rumbling and tumbling around the room. However, when Caren sat on the couch, they decided to take the action onto the couch right next to her! They were rolling back and forth, jumping off the arm on top of one another and just generally creating a huge ruckus way to close.

To complicate it slightly, Sadie, our 4 1/2 month old German Shepard puppy (I know, we should have our heads examined!), was desperately trying to get Caren's attention, by nuzzling her hand over, and over, and over, and over again. I swear, I looked over there and Caren's eyes were spinning. The noise level was just below "Jet Engine" and the whole couch was shimmying around. The visit lasted about 6 minutes, after which she retired to the calm and relative safety of the bedroom.

It was a noble adventure. She really needs to be getting up and moving around, even if it's just to come out to visit the Zoo for a few minutes and get back to base camp.