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#8 Your Special Specialist

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dear Dr Tumorific, 

How can I know which doctor at the specialist practice to see?

Jay

Dear Jay,

This is a very special question. There are many ways to do this.

For instance, if you would like to use the guidance of the spirits, print out pictures of all the specialists in the specialist practice. Then paste them to a Ouija board. As the paste dries, burn some incense and douse yourself in patchouli oil (at least 5 feet away from the burning incense so as not to light yourself on fire). Clear your mind, and let the spirits of the medico-industrial complex guide the planchette (Ouija piece) to the answer.

If you're less spiritually minded, you could tack that Ouija board to the wall and throw a dart to pick your specialist. Why did you even have a Ouija board in the first place?

Finally, there's the superficial method. If looks can kill, they can also save your life. Peruse the photos. Which one looks most doctorly? Do you prefer red-headed doctors? Are you more comfortable if your cardiologist is ugly? It's all a matter of taste.

But, if you want my real opinion, it's complicated. There are a lot of factors. I am going to interpret the question broadly. I'm not going to talk not just about how to choose a specialist within a given practice, but how to choose any specialist anywhere.

1. This is the most aggravating, but, for many, the most important question to answer: which specialists take your health insurance? More and more, insurance companies are making deals with specific groups of doctors, and if you go to someone outside those groups, you have to pay a higher price, or in some cases, you won't be covered at all. 

Sometimes your primary care doctor can get special exceptions, but the insurance company will then penalize the primary care doctor's organization financially. This puts primary care docs like me in a tough situation. We would like our patients to go wherever they want to go, but if we ask for too many exceptions, we will get in trouble with our employers. But when we don't think an exception is warranted, we end up being the bad guys by telling our patients they can't get what they want, because, let's face it. almost no one reads their insurance contracts, so the fact they can't see their friends 'great specialist' comes as a nasty surprise.

2. Next, where is the specialist located? Assuming you're not a medical oddball like me, convenience may be a good way to find a specialist. Especially if you are elderly and have a hard time going places, Dr. Nearby may be the best for the job.

3. Also, which specialist works best with your primary care doctor? Like all primary care docs, I have a few people in each specialty who see almost all of my patient referrals. I know them, like them, and trust them, and I can get ahold of them easily. There are some who will call me within 5 minutes if I text them. I even bug them about random questions when I'm not sending them patients. And if I am sending them a complicated case, I will call and talk to them about the details instead of just sending them a brief written referral request. All else being equal, ease of communication goes a long way towards quality of care.

4. Finally, how special do you need your specialist to be? Aside from intelligence and conscientiousness, the quality of a specialist for a given problem depends largely on how often they see and deal with the problem.

You don't need to go to a medical Mecca to find a gastroenterologist who is an absolute wizard with a colonoscope, and you do not need to go looking far afield for the world's greatest hip replacement surgeon. There are doctors all over the place who do dozens upon dozens of these procedures all the time.

But on the other extreme, you could be like me and have a type of radiation-induced tumor that is rare even among radiation-induced tumors and in a very difficult to reach spot in the bone under my right eye. In 2005, I could have gone to the highly prestigious Wicked Famous Cancer Hospital in my home town and been operated on by very eminent surgeons who had never before worked as a team, much less done my operation ever before. (No kidding! I was going to be their very first case together!) Instead, I chose to go 215 miles away from home to a team of the F'in' Famous Cancer Hospital who did 50 of those surgeries a year. As a result, I still have my right eye. (See http://www.tumoriffic.org/Part%20II.htm, April 17, 2005, The Clash of the Surgeons, or The Eyes Have It!)

The most common way to locate one of these super-specialists is to know somebody who knows somebody, or to ask your doctors, who hopefully will know somebody who knows somebody; I call this the Medical Mafia.

You or your doctor could also look up who is getting NIH grants in that area (https://projectreporter.nih.gov/reporter.cfm), or research who is publishing articles about their work on similar cases by searching in pubmed (https://www.ncbi.nlm.nih.gov/pubmed/).

So, how to find the right specialist is a very special question. Thanks, Jay, for another good one.

Be well,

Dr. Tumoriffic

#7: The Never Ending Prescription

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dear Dr. Tumoriffic,

Why does it take so long to update my med list in the EMR? I haven't taken that med for 5 years.

Liz




Dear Liz,

The reason is that your medical record is constipated. Clearly, it has not been eating enough fiber. Now, it's paying the price. I recommend you give your medical record prune juice. If that does not work, try giving it Colace. If that does not work, Miralax.

If it's still holding back, desperate measures may be called for. The next step is an soap suds enema. Giving an enema to a medical record is really unpleasant. They tend to struggle, and, if you are successful, it's really ugly. I would wear an apron and put lots of newspaper on the floor.

Finally, you may have to institute the measure of last resort, the manual disimpaction. This is one of the most unpleasant procedures you can perform, both for you and your medical record. You should definitely wear gloves and hold your breath for as long as possible. However, the result is likely to be cathartic for both you and the medical record.

Once your medical record has become regular, it should be able to update itself just fine.

Of course, if your medical record is already regular, there are other explanations. Some systems, like my dearly beloved Epic, do not automatically discontinue medications that obviously should be discontinued. For instance, the short course of azithromycin (after a buttock injection for ceftriaxone) for gonorrhea should, clearly, automatically stop. If the patient needs it again (and I have had patients like that), the patient should at least come in for a stern talking to about condoms before getting a refill. If your doctor is not rushed and thinks of it, they can write in a discontinuation date for the medication, but the fact that they have to do that for obviously short term medications is ridiculous.

Another possibility is that your medication was discontinued by a doctor who uses a different electronic medical record system. As of right now, there is no automatic way for your pharmacy and your other providers to know when a medication has been discontinued by another doctor. As a primary care provider, theoretically, I get all specialist notes, and I try hard to look through them for important details like discontinuations, but it's time consuming.

It's also very dangerous that pharmacies are not automatically notified when a doctor wants a patient to stop taking a medication. Especially with men and older patients, the patient may not know exactly which pill they are supposed to stop. So unless the doctor's office calls the pharmacy and tells them not to refill, the patient may continue taking that medication and continue to get that painful genital rash that it causes.

In the end, it often falls to the patient to know which medication to stop taking and to remember to ask your physician to update the EMR manually. That's not how it should be, and it's highly dangerous, but that's how our messed-up system works. Sorry for the bad news.

Be well,

Dr. Tumoriffic

Getting Your Ducks in a Row

#6: Pills, Pills, and More Pills!

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dear Dr. Tumorific, 

I can't remember the name of the medication I take, it's round and white. Do you know the one I'm talking about?

D

Dear D,

Take this to heart:

One pill makes you larger, and one pill makes you small,
And the ones that mother gives you don't do anything at all.

--Jefferson Airplane


Pills, pills, and more pills. A round, white pill has the blandest of all shapes and colors. I need more information.

Is it a big pill, or a little pill? Is it tasty, or gross? What happens if you give your husband five or six of them? If they're sildenafil (Viagra), you should know right away. If it's a water pill, like furosemide (Lasix), that should be pretty easy to identify this way, too. Still don't know? Give him more! Of course, he may end up in the emergency room getting his stomach pumped, but, sometimes, that is the price of knowledge.

Okay, okay, just kidding. Do not, under any circumstances, take a whole bunch of pills you can't identify, or give them to someone else!*

The sad truth is that most of the time, we doctors have no idea what the pills we prescribe look like.** It's not our fault. Even for a single type of medicine, different manufacturers make pills that don't resemble each other at all. Sometimes, different doses from the same manufacturer don't look similar and may be nearly identical to entirely different medicines.

This can lead to dangerous or amusing situations. For instance, one friend of mine was on vacation and mistook his sleeping pills for his blood pressure pills. He then went to after-dinner cocktails and had a couple of very delicious margaritas. Even though they were small and did not taste strong, he quickly found himself quite soused.

Manufacturers could, theoretically, have some uniform standards for pill appearance (antidepressants could be blue, water pills could be yellow, and so on), but they don't. So I have no clue what your pills look like. But I do get asked questions like yours quite frequently. It happened last week. Especially as they get older and have more medical conditions, patients often don't know what it is they are taking. The complexity of the names of the drugs makes it harder. ***

A couple of weeks ago, I stayed at work quite late, taking 45 minutes to explain a patient's asthma meds to him over and over again. I then called his daughter and explained them again, because the patient seemed a little demented. The patient then came in last week and complained that I didn't bother to explain his medications. There's no pleasing some people. Another patient had been taking a medication I meant for him to stop, but actually stopped taking a medication I only wanted to change the dose on. I think I explained it pretty well, but it didn't sink in.

Try to remember what it is you are taking and why. If you can't remember the names of all of your medicines, bring the bottles in whenever you go to the doctor. Better yet, bring someone you trust with you to write them down and make a master list of the names, doses, and what they are for, including vitamins and supplements. And if you have a family member who has complicated medical problems, maybe you should volunteer to go with them to the doctor.

Digression: This is part of a larger point I plan to repeat a lot. Try NEVER go to a doctor for a complicated problem without a helper you trust. This is true if you are 93 and having memory problems, or if you are young and have a great memory. It has been true for me during my various Tumoriffic adventures. My wife is always at my side, writing things down and coming up with questions or remembering ones I forget to ask. It can be disorienting and scary to be a patient no matter who you are or how much you know. Here endeth the lesson.

So don't pay too much attention to whether your pills are red, white, or blue. Learn their names, and try to remember what they do. Yes, it is my responsibility to do my best in the limited time I am given to explain them to you. But ultimately, no one can pay as much attention to your own health as you and your family can. Know your pills.

Be well,

Dr. Tumoriffic



* Strangely enough, there is a thing called a pill party. People will come to the party and drop a bunch of pills in a jar and mix them up. Then, party-goers will just take random pills. I'm sure I could break such a party up pretty quickly if I brought a bunch of laxatives.

In other crazy pill lore, there was a rock star in the 70s who would accept random pills from his adoring fans and take them immediately. I don't think it was a member of the Grateful Dead, but it could have been. Please tell me in the comments if you know.

** A major exception would be the occasional generic Adderall pill one might find around the call room during residency.

*** The names of generic drugs are often purposely difficult to pronounce and remember. That way, the doctors and patients will have a comparatively easy time remembering the brand name when the patent runs out, so they are more likely to prescribe the brand rather than the less expensive generics.

Ginny says, "know your pills!"

#5: The Top 10 Reasons to Come Back After Labs

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dear Dr Tumoriffic,

My labs were drawn three weeks ago--why do I need an appointment to know what they report?

Jay

Dear Jay,

Here are the top 10 reasons your doctor is making you come in for an appointment to tell you about your lab results 3 weeks after they were drawn:

10. Your doctor is lonely. See, a good doctor is like the Maytag repairman (Google it, youngsters!). No patients ever come to visit, because he or she does such a good job keeping them healthy.

9. Your labs will reveal that you have an embarrassing disease, and your doctor just wants to see the look on your face and laugh maniacally like some comic book villain.

8. You're their very favorite patient.

7. There is no number 7.

6. Ed McMahon will be waiting to award you the Publishers' Clearinghouse Sweepstakes grand prize.

5. It's a trap! Run away!

4. I'm tired, and it's late, so I'm skipping to the serious ones.

3. The results have not answered the diagnostic question the doctor wants answered, and they want to get you in to examine you again and ask more questions.

2. The results show that something serious is wrong, and your doctor wants to tell you in person.

1. Your doctor's employer is very stingy. Insurance companies don't pay for the time your doctor takes to write a letter or make a phone call. They pay when you come in. This is the least likely answer, but things are getting so cut-throat in the health industry, I wouldn't put it past them. Stay tuned. It may be standard practice in a few years.

Be well,

Dr. Tumoriffic


PS: Addendum for issue #2, about why doctors don't know what things cost.

Jay said: This one needs an addendum: doctors not knowing how much their own visits cost.

This a good question. I don't know. The insurance company pays whatever their contract with the health care organization says they pay, so it's practically unknowable. Out-of-pocket visits are rare and vary from place to place. Kind of sad, really. I don't know whether my patient is paying a ridiculous co-pay for a visit just to hear about their labs 3 weeks after they are drawn.



Another shamelessly cute picture to make you look at my blog:

#4: Why, Oh, Why, No MRI?

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dr. Tumorific,

Why are you refusing to order an MRI every time my yoga instructor thinks I need one?

Nina

Dear Nina, 

Clearly, your question was a bit tongue-in-cheek, so I will answer it with the utmost seriousness--but in rhyme. It doesn't scan too well, but dammit Jim, I'm a doctor, not a poet!


Why, Oh, Why No MRI?

Patient:
Why can't I get an MRI?
My back, it hurts! I want to cry!
A nasty pain shoots down my thigh!
I think it's cancer! I might die!

Doctor:
Is it worse at night, or when you wake? 
Is it worse with rest? Do both legs ache?
And is the pain on your back bone?
Or to the side when it makes you groan?

Has your leg gone limp and weak?
Your crotch gone numb? Your anus leak?
Is your pee messed up? No? Then don't freak.
Most times, it's gone within 6 weeks.

Patient:
But can't a surgeon fix my spine?
This one bad disk that's out of line?
I'm in such pain, oh doctor mine.
Just operate and make it fine.

Doctor:
I've seen a thousand painful backs
That have been hacked by surgeon quacks.
And docs with whom I'm  much impressed
Might bat 500 at their best.

Your pain's so bad, it makes you curse,
But surgery might make it worse.
We spend more bucks on aching backs
Than all but diabetes and heart attacks.

We haven't got a treatment yet,
But we might hook you on Percocet.
So unless your story rings a bell,
An MRI has naught to tell.

So though it hurts, it's much more wise
To do some gentle exercise.
And in a month or in a day,
It almost always goes away.

Be well,

Dr. Tumoriffic


PS: Got a question you'd like me to post about? E-mail tom@tumoriffic.org!

Beware of quacks!

#3: Evil Medical Record Fairies

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

I have two questions today. I picked two because I don't really have a good answer to the first, so that one is going to be short and mostly BS. Here goes:

Dear Dr. Tumoriffic,

Why did my (former) HMO get rid of all the nurse practioners? (This happened at Kaiser; don't know if it is specific to them or an industry wide issue. All I know is my life was easier with the nurse practioners.

Sharon

Well, Sharon, this is question that doctors and patients have been asking for a long time. Starting about 20 years ago, gradually, nurse practitioners (NPs) began vanishing. Sometimes, they would vanish between patient visits, and, sometimes, even in front of patients. Witnesses talk of a whining sound as the NP appeared to blur and pixelate and then fade away. The more conspiracy-minded believe that they were abducted by aliens or even were aliens themselves. I suspect it was a more natural phenomenon akin to spontaneous combustion. But no one knows. *

Actually, I don't know why Kaiser got rid of its nurse practitioners. Someone certainly does, but this is not an investigative blog. My bet is that they found that they could hire physicians' assistants (PAs) to do the same work for less money.  They don't tend to be unionized, and nurses often are. But that's just my speculation.

Anyway, on to something I actually know about:

Dear Dr Tumorific,

How come you don't have my old doctor's lab results?

Jay

Dear Jay,

Your old doctor didn't like you very much and hid your lab results so you would suffer. We're like that sometimes.

Not really. It was Russian hackers.

Not really. The reason I can't look at your old doctor's labs is because they are hidden in the Kafkaesque funhouse that is the electronic medical record. There is enough craziness in it to write a million books, but I'll try to be brief.

Theoretically, it should be easy for me to see your old labs. Years ago, it made sense that we in medicine would finally join the digital revolution and put our records into computers. With the computerized charts, information would be easily organized and retrieved. Instead of lugging a paper chart or a photocopy of one from place to place, you could just give your permission to a new doctor anywhere in the country. With the push of the button, they could see your whole history, look at your blood tests, x-rays and MRIs, etc, and see the thoughts of other doctors. Medication lists could be accessed so that any one of your doctors could see what any other of your doctors prescribed and every allergic reaction you ever had to drugs. Pharmacies could automatically know when a doctor wanted to terminate a prescription or what prescriptions other pharmacies filled.

The potential for increased safety was enormous. Imagine how many deadly medication interactions could be prevented and how much more quickly care could progress when doctors across different systems could act as a team. And the potential cost-savings were huge. Imagine how many diagnostic workups would not have to be duplicated.

But it was not to be. The evil medical record fairy took this beautiful dream and turned it into a nightmare.

As a patient, I have lived this nightmare. While I live in Boston, my childhood cancer care was done in Baltimore, and much of my adult cancer care has been done in New York. It would have made perfect sense if my New York doctors could have looked at my radiology results from Boston the instant they were done and vice versa. Instead, after radiology studies, K or I would have to go the radiology library in the hospital basement and sign some form so that they would make a CD-ROM and send it to the other system, or, because this was often unreliable, wait for them to make the disk and carry it by hand.

Similarly, I would have to sign forms to have medical records photocopied and mailed up and down the East Coast or carry them myself. I wish I could say that this got better between my big tumor in 2005 and my latest crisis in 2016. It didn't.  We're still in the digital dark ages.

There are reasons why this is so.

First, there are the medical record software companies. If different medical record programs could talk to each other, practices and hospitals would have less incentive to stick with the systems they have. The cost and time associated with transferring all the data from one system to another is prohibitive and fraught with error. Healthcare systems will stick with whatever system they have for a long time no matter what its weaknesses.

Then, there are the large healthcare corporations and hospital networks. Duplicating expensive medical workups may create increased costs for society, but they are big money for the entities that do them. If I had your old labs, I would not be compelled to repeat them.

Meanwhile, those same hospital networks and healthcare corporations make more money if they can keep everything in-house. Having immediate digital access to all new information creates a strong incentive for your doctor not to send you to outside experts.

And, even where communication between software systems should be easy, it is not. Even using the same program, electronic health records in different medical systems do not talk directly to each other. For a fee, one system can access the health records of another, but they don't meld the data, so I still have to know to look in the right place, and the data available are often limited. For instance, I haven't heard of any system that allows docs in a different system to look directly at their MRIs.

It's all a bit nauseating, but medicine in this country is business, and safe, efficient patient care is sometimes not good for business.

And, that, Jay (in a highly abbreviated form), is why your new doctor doesn't have the labs your old doctor did.

As an individual patient, you can't fix the system but you can make it a little better for yourself. You can sign forms to have your medical records copied and sent to wherever you want. I have often found that to be slow with my own records. I try to have copies of the doctors' notes, labs, and radiology studies with me so that i can hand them to a new doctor. Then, I can be absolutely sure they have them and can access them when I need them to. **

Be well,

Dr. Tumoriffic

PS: A lot of this is tied to really dumb government regulations, but that is a topic for another rant.

-->

* The last nurse practitioner in the world actually works in the office next to mine. Her name is Maria. She always brings good food to work and shares it.

** Try to limit your record-copying to the providers' notes, the labs, and the test/radiology interpretations. There is an enormous amount of irrelevant billing nonsense in the medical record that I do not need to see.

This lion is fed up with bad electronic medical record software:

#2: The Medicofinancial Uncertainty Principle

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System

Dear Dr. Tumoriffic,

Why does my doctor always seem to know little or nothing about the cost of the treatment * options s/he is asking me to choose between?

Signed,

Pecunious in Pittsfield

Dear Pecunious in Pittsfield,

This is a very deep and complicated question that those not familiar with either medicine or quantum mechanics have difficulty understanding, but I'll try to explain. 

You see, it is impossible for a doctor to know both the proper treatment and the cost of said treatment at the same instant in time. Some theorize that should such an event occur, there would be an explosion on the scale of several hydrogen bombs together. **

It follows then, that if your doctor proposes a treatment and can tell you the precise cost of said treatment, they must be wrong about one or the other, and you should alert them immediately.

Now for some shameless, but, essentially, true exaggeration. The reason your doctor almost never knows the cost of a given treatment is that the cost depends on your insurance plan. There are more insurance plans than there are kernels of corn in Nebraska, and there are more words in each policy than there are atoms in the entire solar system (not including the Kuiper belt). 

Your insurance company has entire cadres of bureaucrats whose business it is to pay as little as possible for your care and to make it as hard as possible for you to figure out what the cost to you will be before you choose your plan. Some may find that upsetting, but it's the way our system works. 

Meanwhile, the amount charged for treatments and, especially, medications varies over time, even from month to month. In recent years, generic drug manufacturers have raised the prices of even the oldest, most conventional medications. Different pharmacies charge different prices. **** Your insurance company may have a deal with a certain pharmacy chain or may charge a lower co-pay when you use a mail-in pharmacy. 

For treatments, your insurance company may have a special deal with certain treatment facilities. As a rule, these are always on the opposite side of town, no matter which side of town you live on.

So, most of the time, at least, my colleagues and I are as clueless as you are about costs.

Now, occasionally, a doctor may know ways to get medications or treatments at lower prices or even free. Drug companies may hand out samples to doctors to give to patients. (I don't participate in this except in very special circumstances. It's a way to influence doctors to change their prescribing practices and eventually leads to higher costs all around.) Patients can also sometimes get special deals or even free medications from drug companies if they qualify for those programs. Your doctor may know about some of these.

So, apart from the exception above, your doctor does not know jack doo doo about drug/treatment prices.

Love,

Dr. Tumoriffic

* I am going to limit this answer to actual treatments even though you may have meant to include tests in the question. Variable test prices is a related topic but deserves its own post.
** There are rumors that the Department of Defense hopes to harness this effect for military purposes. That would explain the famous and mysterious disappearance of the entire medical faculty of the University of Nebraska Medical School faculty in 1997. **

*** The previous footnote is a baldfaced lie. But what does it mean to be baldfaced? I just shaved. Does that make me baldfaced? Is everything I say, therefore, a lie? Contemplate this.

**** For a good discussion of this, check out http://www.consumerreports.org/cro/pharmacies/buying-guide.htm. Big box stores like Costco and Sam's Club tend to have the lowest out-of-pocket prices, but local Mom and Pop stores also can have deals. If you are paying out-of-pocket, avoid the big pharmacy chains. They take advantage of their market dominance to stick it to the customers. My family uses our local Mom & Pop pharmacy, even though our insurance company tries to force us to use CVS Caremark, a mail-in service. I think it's safer to have a pharmacist who actually knows you, and I actually look forward to going there. Besides, it supports the local economy. (And they give my dog treats.) 

Want to drive a hard bargain? You can get a great deal on 20mg sildenafil tablets (generic Viagra) at Costco. No kidding!

A picture thoroughly irrelevant to the above:

#1: The Late Doctor

Dr. Tumoriffic's Inappropriate Guide

to Navigating the Medical System #1

Q - Dr. Tumoriffic, why does my primary care doctor always run late?

A - Good question! It is entirely possible that your doctor may be dead. Doctors have been known to practice medicine for up to 3 days after death, but at a rapidly declining pace. Be sure to check your doctor's pulse if they are behind.

On the other hand, most healthcare employers give a doctor between 10 and 20 minutes to perform all tasks relating to a visit. That may include reviewing your chart prior to seeing you, listening to your problem, examining you, coming up with a diagnosis and plan, ordering prescriptions, tests, and consults, and recording and billing for the whole event. This leads to pile-ups.

The time limit is easy when the patient is a healthy 23-year-old with runny nose, but what if the patient is a slightly demented, hard-of-hearing, lonely, talkative, 87-year-old with uncontrolled diabetes, high blood pressure, congestive heart failure, emphysema, bad arthritis, anxiety, gout, and stage 3 kidney failure? Perhaps they came in for insomnia but have a urinary tract infection, and fell recently, and gets numbness and tingling in their left hand, and, "hey, doc, before you go, did I mention the crushing chest pain I get when I climb stairs?" This is not an exaggeration, and this is not based on a single patient. Many primary care doctors have patients like this coming out of their ears. (No, not literally. Don't go there.) Not only is it possible that this type of patient is the one before you, it is possible that there have been three of this type of patient before you.

And don't blame those patients either. According to the geniuses in the insurance companies and healthcare corporations, a doctor should only take care of a couple of problems per visit, and if the patient has more than that, they should just invite their complicated patients to come in again and again. But, when you're old and sick, it's an all-day process to arrange a ride, put yourself together, and go to the doctor. And, on a fixed income, even a small co-pay may be daunting, so they may not be able to come back tomorrow, and so on. . .

Or, your doctor might just have a bad case of diarrhea.

A photo completely unrelated to the above: