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.