How My Father Outlived Death

In case any of you are new to BPFL, or happened to miss it, my father died on October 2nd.

It was an expected event, as I will explain; and although I miss him, I am glad his long suffering is over.

You may be thinking, but she said in her title that he outlived death.

He did.

Let me explain.

I have written before, somewhere or other, of the nights when I would come to visit him, from undergraduate school or medical school or work somewhere out West, and we would sit up long after my mother had said her good-nights in her short thin nightgowns that make me blush.  I have never liked to expose my body parts, not out of religious prudery but from sheer terror of exposure.  But I digress.

Dad and I had a lot to discuss in those days.  He called it “talking philosophy,” but it was really his way of being my teacher, guiding me through the process of critical thinking, of Devil’s Advocacy, hypotheticals–he would have made a good lawyer, except that he had a conscience and that was problematic.

Truth be known, he had always secretly wanted to be a medical doctor, so he lived that part of his life vicariously through me.

Our late-night philosophy-fests always featured a liquor bottle: either Dickel (Tennessee corn likker) or Dewar’s Scotch, depending on our taste and what there was.

One night waxed into three A.M. and we were both high as kites, and he says,

“Promise me something.  I mean, really promise me something.”

“Promise you what, Dad?”

“Promise me, and I mean really promise me, that if I get to where I can’t wipe my own ass, that you will shoot me and put me out of my misery.”

He did not own a gun “because if I had one I might use it,” he would say with a darkly suggestive rise of the left eyebrow.  I was never quite sure whether he would be tempted to use it on my mother or himself, but the situation was moot because he did not have a gun.

I, on the other hand, had a couple of guns at the time, a .22 caliber Ruger assassination pistol, which I still own, and a lovely child’s shotgun.  The latter always made me squirm, to think that a century ago and even more recently, people taught their 10-and-12-year-old children to shoot a highly destructive weapon like a shotgun.

I was caught between a rock and a hard place, Psylla and Charybdis, all of those really tight spots, you know, and I was, of course, obliged to tell him yes even though I fervently meant no.  This was no drunken demand.  He really meant it.  The part about not wanting to live if someone else had to wipe his ass.

We all thought he was doomed to perish in the course of his work as a ceramic artist: so many ways to keel over face first in the spinning clay, or burn up in the heat of the kiln and make an ash of himself.

None of that happened.  Instead he got about ten years of his brain and body being whittled away, subtly at first, then galloping along with each day reaching inexorable claws and ripping out some other vital function.  It wasn’t long before indeed he could not wipe his own ass.

Always the teacher, he accepted this new indignity with much more grace than I would have had.

He was about 88 when this happened.  Things tumbled down from there.  Eating became problematic because his hands had ceased to function, so he had to be fed a lot of the time; or else I had to guide his utensil to his mouth, and he might get half of it in if we were working well together.

As you can see, I never did shoot him.

He did make some inquiries regarding how much of his insulin it would take to kill himself, and also about what would happen if he just stopped taking his insulin.  But in the end he did not really want to die by his own hand, or else he was too afraid.  In any case he managed to live until he died.

He outwitted death by about two miserable, agonizing, humiliating years.  He lived right up until the moment that he died.

And wouldn’t you know it, his last request was for something I absolutely cannot do.  He made me promise, though.  Promise me you’ll….

Well, I think he knows what I can truly promise, and what I can’t.

But as far as he and I are concerned, he cheated certain death by two years, and that’s something.

 

Vascular Surgery

WARNING:  NOT FOR THE FAINT OF HEART!

___________________________________________________

Vascular Surgery

There’s a good reason women make the best surgeons, she thought.

Quick, deft hands, single-pointed concentration, focus.

She thought of the women jet engine mechanics she had met in the Air Force.

Not that she had been in the Air Force; but in the course of her duties as a civilian surgeon under contract, she had met them. Now, reining in her reverie, she was intent on the task at hand.

Drat this light, she thought. She really needed a more direct light source, but one has to work with what one has at hand.

Slowly, painstakingly, she drew the outlines with a surgical marker: carotid triangle; carotid vein; carotid artery. This, the artery, was what she wanted.

She steadied the syringe she had readied with an oh-so-fine 27-gauge needle.

2% lidocaine with epinephrine should be enough analgesia for comfort, and enough epinephrine to ensure a relatively bloodless field. She couldn’t help chuckling: bloodless indeed.

Squinting in the insufficient light, she injected the layers: first the skin, then the loose fascia of the neck; lastly, the layer surrounding the vessels of the neck, careful to avoid direct injection into the wall of the vessel, which might cause a spasm.

Now it was time to cut. She picked up the number 11 scalpel and steadied her hand. Carefully, carefully she opened the delicate skin of the neck, noting with satisfaction that the epinephrine had done its job. There was no need for the tiny hemostats she had ready in case of superficial bleeders.

The next layer, the loose fascia, pulsated bluish, overlying the great vessels of the neck. These she would blunt dissect with the larger curved hemostats.

She injected a bit more of the anesthetic, just to be sure. No need to cause discomfort, which might result in unwanted movement.

At last the artery was exposed. She marveled at its pulsations, at the tiny arteries that nourished the big one itself, and the minuscule veins that issued from it, carrying its waste into the larger system of veins, to be cleansed by the liver and kidneys downstream.

Holding her breath, she slid the first hemostat, jaws open, under the artery. Clamp. The vessel, trapped in the jaws of the hemostat, stopped pulsing abruptly. There was no going back now.

Now the second hemostat, exactly one and a half centimeters below the first: clamp. She raised the surgical scissors, poised for the definitive cut between the clamps.

Tilting her head to see better in the mirror, she cursed the dim light in that bathroom again.

And then, the definitive cut!

In a single motion, she swiftly removed the two clamps and was instantly drenched in red liquid. A scream of agony split the night as she sat bolt upright in the bed, heart pounding, drenched in sweat, clutching the sodden bedclothes as she struggled, locked in the arms of the Angel of Death like biblical Jacob.

Frantically clutching her throat, she rushed to the bathroom, the very same bathroom, and strained toward the mirror in the same dim light.

Nothing.

Her throat, graceful and bluish white as ever, shone back at her from the reflection. Sucking in a deep gulp of air, letting it out in a sigh that brought the dog running, she splashed water on her face and neck, toweling off the sweat.

“It’s OK, buddy,” she whispered to her whining canine companion. “Just another nightmare.”

The dog smiled anxiously, wagged his tail tentatively, and licked her calf. She reached down and patted his faithful head.

“Good thing I have you, she murmured. Stripping off her sweat-soaked nightgown, she rinsed off in the shower before throwing on a fresh one. She sank into the recliner with a book: sleep would not visit again, not tonight.

 

Suicide Prevention is Everyone’s Business| American Association of Suicidology

Suicide Prevention is Everyone’s Business| American Association of Suicidology.

Suicide

It’s Wednesday again.  It’s Suicide Prevention Week.  So instead of my customary Wednesday Breaking the Silence of Stigma/Voices of Mental Illness interview, I’m going to talk about suicide.

Of course talking about suicide may be triggering to some people, so if you’re triggered by it, stop reading now.

I’m not going to talk about statistics or any of that stuff; it’s all over the Internet right now and you can easily access it for yourself.  This is a personal essay about my own dance with suicide, or as I prefer to think about it, leaving the planet on my own recognizance.

Life is finite.  We all have our time to be born, to live, and to die.  King Solomon wrote about that in Ecclesiastes, and The Byrds wrote the song “Turn, Turn, Turn” based on King Solomon’s Book.  Those are the constants of life:  Birth, the changes of living on the Earth, and the change of leaving the earth, whether in a natural way like disease or old age, or an unnatural way such as a car accident or a tree falling or a tsunami or something like that.  Or murder.  Or suicide.

Is suicide a variety of murder?  Some would say yes.  In my spiritual tradition (I have renounced the term “religion” because I no longer relate to it in that way), the soul is virtually injected into the body, to be taken back to its source when its mission on earth is finished.  Therefore the body is a vessel for the soul, and the human who embodies that soul does not own it and therefore does not have the right to prematurely abort its mission, because it has been assigned its mission by the Higher Source.  I can buy that, and that is a philosophical barrier to my leaving the planet before I am taken.

I think about it all the time, though.  There is not a day when I do not fantasize about leaving the unpleasantness that is my life.  For some reason, I have been given a life filled with sickness, pain, loneliness, failure, and trouble after trouble after trouble.  If I attain a goal, sooner or later it will be taken away from me.  I am not just feeling sorry for myself.  These are simple facts that boggle the mind.

I do have one joy in my life, and I am afraid even to write this, because I fear that my joy will be snuffed out:  I have a son who is the one and only reason that I remain on the planet.  I pray that the Universe lets me keep him, not so much because I would instantly leave if he disappeared, but that he is truly my one and only source of joy.

That is one of two reasons that I have not yet left the planet.

The other one is that many years ago I knew someone who took his own life, right outside my house, using my own gun.  It was a horrifying experience, and I was thrown into jail on suspicion of murder until his suicide note was found, analyzed, and found to be authentic.

When I got out of jail I returned to the spot where he had shot himself, and sat myself down on a stump that happened to be right there.  I meditated on his energy field, and he appeared to me: not physically, or visually, but I felt his presence very near.

He said to me:  If you are thinking of doing this, do not do it.  We are sent into our bodies to accomplish certain tasks, of which we are unaware.  If we kill our bodies, then are not relieved from the tasks.  We still have to accomplish our missions, which are now revealed to us; but without bodies to carry out these tasks, it is even more difficult than it was in life.  No matter how much you think you are suffering now, without a body your suffering will still exist, yet even more so because you will lack a physical existence, a vessel to contain you and make it possible to do your mission without further pain.

And then he left me.  I sat weeping, because I did not want to be here.  I was seventeen years old.  Now, approaching the age of sixty at the end of this month, I still long for the release of death, to be relieved of the suffering of this world.

My spiritual tradition tells me that the difficulties I experience are all symptoms of carrying out valuable spiritual tasks, and that the more of them there are, the closer I approach the clearing of spiritual blockages, so that my path to the “world to come” will be bright and clear.  I certainly hope this is the case.  I am not the kind of martyr who welcomes catastrophe for its own sake.  I don’t like it.  I loathe it.  I just want peace and quiet, and, if it’s not too much to ask, even happiness, even reasonable prosperity from honest work, even a brain that functions and doesn’t betray me around every corner.  And freedom from vermin, both many-legged and two-legged.

My suicide plan is beautiful.  It involves no violence, no overdoses, no trauma.  I won’t tell you what it is, because some of you might be tempted, and that would indeed be murder.

But, for the reasons I have stated above, it must remain only a fantasy, to soothe me when my brain is eaten with fire, or when another of my dreams goes up in smoke.

I wish for you, that you would never have to live like this.  I wish you joy and peace and love, or whatever it is that makes your life pleasant and delightful.

Breaking the Silence of Stigma: The Hero Who Lost the War

January, 1991.  Ba’athist Iraqis had invaded Kuwait.  Unprepared for invasion, the Kuwaitis fled helter-skelter, leaving everything behind.  The Iraqis occupied all strategic positions, including schools–and hospitals.

Hospital staff came under fire and were forced to flee.  Patients were abandoned, and those on life support were doomed.

And the babies in the newborn nurseries, the neonatal intensive care unit, were abandoned as well.  Unsubstantiated witness testimonies tell of babies being dumped out of incubators and left to die.  The stories are now discredited as part of a propaganda campaign, but there is one witness whose testimony was never revealed, because he operated under a thick cloak of secrecy.  He was the one who liberated the babies.

My friend, my comrade, my co-worker and partner pediatrician.  I cannot reveal his name, so I will call him Larry.

Larry joined the Air Force ROTC in high school, and continued in college.  He won an Air Force scholarship to medical school, and went on to complete his residency in pediatrics.  When the time came for him to enter active service, the war that was to become the Gulf War, including Operations Desert Storm and Desert Shield, was heating up.

Larry didn’t see much direct action at first, since he was stationed in Germany, caring for children at the military base and the occasional child war casualty airlifted for advanced pediatric care.

But in January and February of 1991, a Coalition of Western forces brought the mayhem to a halt.  And Larry was one of the first called to the front.

His mission:  to rescue the babies who were still alive in the hospital.

In the dead of night he clung to the helicopter’s rope line.  He dropped to his feet on the roof of the hospital.  Entering by way of the main air vent, he found his way to the nursery. He had memorized the layout of the hospital, and found the nursery in pitch dark.  He had to be quick in his triage assessment:  which babies would live without help, which would likely die no matter what was done for them, and which tiny lives could be saved if they were evacuated quickly.

Scooping up two babies at a time, he made his way back to the hovering helicopter basket.  He tugged twice on the rope, the signal to carefully raise the basket into the machine, where neonatal nurses waited, to immediately begin working on the babies while Larry went back for more.

He rescued more than ten babies before Iraqi soldiers discovered him, and he had to evacuate.  He never stopped crying for those he was forced to abandon.

The chopper, laden with precious cargo, flew back to its base. The babies were transferred to a fixed-wing aircraft and flown to Germany, where Larry took over their care.  Miraculously, all of them lived, and even more miraculously, most were reunited with their Kuwaiti parents after the war ended and Kuwaitis returned to their homes.

Larry’s tour of duty was over.  He was, of course, highly decorated for his acts of heroism.  And he returned home, to marry his high school sweetheart and adjust to civilian life.  Soon four children filled their house with welcome clamor.

I met Larry in 1996, when I took a job in the clinic where he was employed as a general pediatrician.  It was my great fortune to share a “pod” with him, as sub-sections of the huge pediatrics clinic were called.  We were pod-mates.  I loved working with Larry.  He was as humble as he was brilliant.  Whenever one of us had a perplexing case, we would call on the other to “think together”  until our united brains found a solution.  We were a great team.

One day Larry approached me as I sat at my desk writing up a chart.  His face looked pinched and worried.

“Laura, can you help me out?” he asked in a furtive whisper.  “I’ve been feeling depressed.  Can you write me for some meds?”

I must admit that I was shocked.  Not that he would disclose that he was depressed; I suffered from bipolar illness myself, although no one at the clinic knew it. I had the feeling that it would be sudden death to my career to disclose that.  So I understood Larry’s dilemma.  But I could not stand in the place of a psychiatrist, and I was shocked that Larry, who never took risks with patients, would be taking such a risk with himself, asking a colleague to medicate him for depression.  I had my own shrink, although in another city, whom I paid out-of-pocket so that there would be no insurance records.  I was taken aback that he would ask me to do something so dangerous and unethical.  I knew he had to be in unbearable pain to do something that went completely against his grain, as a physician.

“Larry, you need to see a psychiatrist,” I whispered back.  “I’m no substitute for a shrink.”

“Laura, please,” Larry begged, tears welling up.  “Just enough to get me through, so I can make an appointment.  Please.  Things are bad at home.  I’m fucking up.  I have to start feeling better, or I’m going to lose my family.”

I couldn’t let him suffer like that.  After extracting a promise from him that he would see a psychiatrist within the week, I wrote him a script for an antidepressant.

As the week progressed, Larry’s mood seemed to lift.  He worked like a fiend, whistling as he shuttled between exam rooms.  I wondered if he had made his appointment.  He never told me.  I never asked.

It was my day off.  I was getting ready to go skiing, and just as I opened the door to leave the house the phone rang.

I didn’t like it.  The phone never rang at nine in the morning.  The kids?  My husband?  My parents?  What?

It was the clinic administrator.

“Laura, can you please come in?  Larry didn’t show up for work this morning.”

My heart hit my feet.

“OK, I’ll be right there.”  I put down the phone and numbly changed into my work clothes.  I drove the ten minutes to the clinic, heart pounding, sweating in the frozen Western winter.

When I arrived at the clinic, a police cruiser was waiting in the parking lot.

“Dr. L, can we speak with you for a minute?” asked the uniformed officer.

“Of course.”  I lead the way to the administrator’s office.  The administrator sat in his office chair, tanned skin drawn tight over his bony face.

“What’s this about, Dick?” I demanded of the administrator.

“It’s Larry,” he said.  “His wife called in a missing person report last night when he didn’t come home from work.  He was found this morning in a motel.  He shot himself with his military .45.”  And Dick came as close as I ever saw him to crying.

“Dr. L., do you have any information that might help us understand why Larry would take his own life?” asked the officer.

I told him about Larry’s depression, and that he had asked me for help, and that I had written him for a week’s worth of medication on the condition that he seek psychiatric help.

“Thank you, Dr. L., that is very helpful,” said the officer respectfully, hat in hand.  I wondered if he was going to arrest me for giving Larry that script.  I felt bad.  Real bad.  But the clinic administrator reassured me, told me that I had done nothing wrong and could have done nothing to prevent what happened.

My dear friend Larry.  He was a true war hero, but he lost the war of mental illness.  For fear of being discovered.  For fear of being ostracized by his church.  For fear of losing his job and his family.  He lost it all.

depression comix #135 [tw: suicide]

Once again, Clay is reading my thoughts. How does he do that? Or is it really true that we are not alone in our passive suicidal death wishes? I don’t know about others, but I have had the exact same thoughts. The only differences are the thought of someone finding me (NO!), the thought of someone having to live the rest of their life having hit me with their (car, bus, train), and the horrible mess I would make on the sidewalk for someone to have to clean up, and bystanders to have to see. In other words, the thought of being the agent of someone else’s nightmares. So I guess I’m not there yet, right? Hope none of us ever are.

Depression Comix

depcom135

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Breaking the Silence of Stigma: In Memory of Kaitlyn

Kaitlyn, Rohonda's daughter

In Memory of my daughter, Kaitlyn Nicole Elkin

On April 11, 2013, I got the most dreaded call that any parent could ever get, a call from the police in the town where my 23 year old daughter Kaitlyn was starting her 3rd year of medical school at Wake Forest School of Medicine.  He said he had to talk with me about my daughter and that I had to go there to be told what he had to say.  I begged this man to tell me then, as I would have a 3 and a half hour drive to Winston-Salem.   My initial split second thought was, “Kaitlyn is in trouble!  She’s never been in trouble in her life,” then my thoughts turned to other things and the blood left my body as he told me what happened. He said that she was deceased.  I envisioned her getting into an auto accident and when I asked him what had happened, he said that she had taken her own life.  My world and everything I’ve ever known came crashing to an end at that moment.

How could this have happened?  My daughter seemed to be the most together person I have ever known in my life.  Graduated valedictorian from Whiteville High School, graduated summa cum laude from Campbell university in 2 and a half years and got accepted to medical school where she could pursue her lifelong dream of being a doctor and she was doing extremely well in it.  She had friends; she had just taken a Step One medical board exam that she felt she did well on.  She was an artist, a writer, avid runner, she had common sense and was wise well beyond her years.  She was excelling and seemed to have the world in her grasp.

I had just seen Kaitlyn the weekend before as she had come home for a few days for Easter.  We had a wonderful mother/daughter day and we went shopping, out to eat and the movies.  We had a wonderful time and she seemed totally happy.  How could this have happened?

She wrote my husband and I a two page suicide note, (as well as letters to some of her friends and her sister Stephanie.)  In this letter she stated that she had been sad all of her life and had worked very hard all her life to hide it and protect us from it.  She said that she knew she would have been a successful doctor, wife and mother, but that she was exhausted from the weight of the sadness she has had all her life, could not go on, and this is what made sense to her.  She stated that I might wonder why she had not sought help and that she did not know why herself.

She was a high achiever, but we never put any pressure on her to succeed because she set these high goals for herself.

The reason I am writing this letter is to tell all parents, friends, or spouses, that no matter how happy someone seems to be, there may be a devastating depression within that they are hiding.  Parents, ask your children from time to time, “how are you really doing” and make them talk about their feelings.  As you do this, I hope that they are forthcoming with you, my daughter was not and we had a very good and close relationship.

I’m devastated by her loss, lost in a sea of “what could have been”, the wonderful life that she could have continued to have had.  But I celebrate her life, thanking God that I had the honor of having this beautiful being in my life for 23 years.  But I wish I had more.

If this letter helps at least one person to come forward with their depression, or a loved one to ask about it and have that child open up to them, then it is worth it.

Rest in peace my beautiful daughter, the peace that I thought you already had.  And as I’ve always told you, I love you bigger than the universe.

Rhonda Sellers Elkins

Clarkton, NC

Vascular Surgery

This piece was previously published in Close2TheBone.

Vascular Surgery

There’s a good reason women make the best surgeons, she thought.  Quick, deft hands, single-pointed concentration, focus.  She thought of the women jet engine mechanics she had met in the Air Force.  Not that she had been in the Air Force; but in the course of her duties as a civilian surgeon under contract, she had met them.

 Now, reining in her reverie, she was intent on the task at hand.  Drat this light, she thought.  She really needed a more direct light source, but one has to work with what one has at hand.

 Slowly, painstakingly, she drew the outlines with a surgical marker:  carotid triangle; carotid vein;  carotid artery.  This, the artery, was what she wanted.

 She steadied the syringe she had readied with an oh-so-fine 27-gauge needle.  2% lidocaine with epinephrine should be enough analgesia for comfort, and enough epinephrine to ensure a relatively bloodless field.  She couldn’t help chuckling: bloodless indeed.

 Squinting in the insufficient light, she injected the layers:  first the skin, then the loose fascia of the neck; lastly, the layer surrounding the vessels of the neck, careful to avoid direct injection into the wall of the vessel, which might cause a spasm.

 Now it was time to cut.  She picked up the number 11 scalpel and steadied her hand.  Carefully, carefully she opened the delicate skin of the neck, noting with satisfaction that the epinephrine had done its job.  There was no need for the tiny hemostats she had ready in case of superficial bleeders.  The next layer, the loose fascia, pulsated bluish, overlying the great vessels of the neck.  These she would blunt dissect with the larger curved hemostats.  She injected a bit more of the anesthetic, just to be sure.  No need to cause discomfort, which might result in unwanted movement.

 At last the artery was exposed.  She marveled at its pulsations, at the tiny arteries that nourished the big one itself, and the miniscule veins that issued from it, carrying its waste into the larger system of veins, to be cleansed by the liver and kidneys downstream.

 Holding her breath, she slid the first hemostat, jaws open, under the artery.  Clamp.  The vessel, trapped in the jaws of the hemostat, stopped pulsing abruptly.  There was no going back now.  Now the second hemostat, exactly one and a half centimeters below the first: clamp.  She raised the surgical scissors, poised for the definitive cut between the clamps. 

 Tilting her head to see better in the mirror, she cursed the dim light in that bathroom again.  And then, the definitive cut!  In a single motion, she swiftly removed the two clamps and was instantly drenched in red liquid.

 A scream of agony split the night as she sat bolt upright in the bed, heart pounding, drenched in sweat, clutching the sodden bedclothes as she struggled, locked in the arms of the Angel of Death like biblical Jacob.

Clutching her throat, she rushed to the bathroom, the very same bathroom, and strained toward the mirror in the same dim light.

 Nothing.  Her throat, graceful and bluish white as ever, shone back at her from the reflection.

 Sucking in a deep gulp of air, letting it out in a sigh that brought the dog running, she splashed water on her face and neck, toweling off the sweat.

 “It’s OK, buddy,” she whispered to her whining canine companion. “Just another nightmare.”  The dog smiled anxiously, wagged his tail tentatively, and licked her calf.  She reached down and patted his faithful head. 

 “Good thing I have you, she murmured.  Stripping off her sweat-soaked nightgown, she rinsed off in the shower before throwing on a fresh one.  She sank into the recliner with a book: sleep would not visit again, not tonight.

 

 © Laura P. Schulman, MD, MA 2012 All Rights Reserved

If It Doesn’t Walk or Quack Like a Duck, Is It Still a Duck?

Dear readers, this post is going to be indelicate.  It will mention bodily functions.  It is about bodily functions.  So if you have a delicate constitution, or just don’t want to go there, I won’t be offended if you stop reading right now.  However:  It is also about the way we neuro-atypicals are treated by the medical establishment when our body functions go wrong.  It is about the fact that we are pigeon-holed from the word “hello,” according to our medication list, and that we are, through the jaundiced eye of stigma, often the recipients of substandard care.

In a previous post, I discussed a medical aphorism: “If it walks like a duck, and quacks like a duck, then it probably is a duck.”  The simple meaning of this, of course, is that if a person exhibits the symptoms of a disease, then they probably have that disease.  Take, for instance, a case of appendicitis: if the person has severe right-lower-quadrant abdominal pain, with or without vomiting and/or fever, and certain specific signs on physical examination, then that person very likely has appendicitis.  Or migraine: severe one-sided headache, an aversion to light, perhaps with vomiting.  I’m sure you can think of your own examples.

What about Irritable Bowel Syndrome (IBS)?  Conveniently, there are a set of specific criteria called the Rome Criteria, which were developed by the Rome Foundation.  These are:

C1. Irritable Bowel Syndrome Diagnostic criterion*
Recurrent abdominal pain or discomfort** at least 3 days/month in the last
3 months associated with two or more of the following:
. Improvement with defecation
. Onset associated with a change in frequency of stool
. Onset associated with a change in form (appearance) of stool
* Criterion fulfilled for the last 3 months with symptom onset
at least 6 months prior to diagnosis
** “Discomfort” means an uncomfortable sensation not described as pain.
In pathophysiology research and clinical trials, a pain/discomfort frequency of at least
2 days a week during screening evaluation is recommended for subject eligibility.

Bolding is mine, to call attention to the fact that the single overarching diagnostic feature is recurrent abdominal pain or discomfort.

I have reason to be researching this condition, because I do not have it.  I have something else that has caused my intestines to misbehave badly.  I will tell you why I’m bringing this up in a minute.

Now that we have looked at the Rome Criteria (which, as paltry as it is, happens to be the “gold standard” for the diagnosis of IBS), we must consider some factors that absolutely rule it out.  Things that do not walk or quack like ducks.

The biggest, baddest one is unintentional weight loss.  If a person has IBS, by definition they do not lose weight.  Conversely, if they lose weight, they do not have IBS.

Onset in middle age is another factor that calls the diagnosis into question.  IBS generally starts in late adolescence or early adulthood.

But wait: if you have a mental illness, all bets are off.  Listen to this introduction to the subject by an author on Medscape, the physician’s information superhighway:

Irritable bowel syndrome (IBS) is a functional GI disorder characterized by abdominal pain and altered bowel habits in the absence of specific and unique organic pathology. Osler coined the term mucous colitis in 1892 when he wrote of a disorder of mucorrhea and abdominal colic with a high incidence in patients with coincident psychopathology. Since that time, the syndrome has been referred to by sundry terms, including spastic colon, irritable colon, and nervous colon. (Bolding mine.)

And after two-thirds of a page describing the physiologic understanding of the illness, this paragraph follows:

Psychopathology

Psychopathology is the third aspect. Associations between psychiatric disturbances and irritable bowel syndrome pathogenesis are not clearly defined.

Patients with psychological disturbances relate more frequent and debilitating illness than control populations. Patients who seek medical care have a higher incidence of panic disorder, major depression, anxiety disorder, and hypochondriasis than control populations. A study has suggested that patients with irritable bowel syndrome may have suicidal ideation and/or suicide attempts strictly as a result of their bowel symptoms.[2] Clinical alertness to depression and hopelessness is mandatory. This is underscored by another study that revealed that patient complaints that relate to functional bowel disorders may be trivialized.

Let me ask this simple-minded question: is it possible that someone with a debilitating physical illness could develop a reactive depression as a result of having to run to the toilet 10 or 20 times a day, never knowing when the desperate urge might strike?  Is it possible that a person, after being housebound as a result of this illness, might become suicidal?  How about if that person, despite intense suffering without respite or relief, is repeatedly told that there is nothing physically the matter, and it is “all in their head”?

I will give the author credit for the following statement:

“Whether psychopathology incites development of irritable bowel syndrome or vice versa remains unclear.”

The remainder of the section goes on to list a host of physical pathology noted on colonic and small bowel biopsy; this, in spite of the fact that the entire premise of the article is to maintain that there is no evidence of physical pathology in IBS.  Curious, that.

The point that I would like to drive home here, is that anyone with a psychiatric diagnosis who walks into a physician’s office complaining of abnormal digestive symptoms for more than three weeks is going to be labeled with IBS, whether their symptoms match the Rome Criteria or not.  In fact, a recent position statement by a GI professional organization stated that diagnostic testing beyond a simple blood count is unnecessary if the demographics suit the diagnosis and no alarm symptoms such as dramatic weight loss are present:

The 2009 American College of Gastroenterologists (ACG) evidence-based position statement on the management of IBS does not recommend laboratory testing or diagnostic imaging in patients younger than 50 years with typical IBS symptoms and without “alarm features”. Alarm features include the following symptoms and history:[14]

  • Weight loss
  • Iron deficiency anemia
  • Family history of certain organic GI illnesses (eg, inflammatory bowel disease, celiac sprue, colorectal cancer)

While rectal bleeding and nocturnal symptoms have also been considered alarm features, they are not specific for organic disease.

As a physician I find this shocking.  I can think of many possible pathologies that would cause abnormal bowel movements with or without abdominal distress, such as giardiasis, lactose or fructose intolerance, gluten intolerance, hepatitis, pancreatitis, diverticulitis, even appendicitis, that could cause such symptoms.  And given the fact that physicians today rarely lay a hand on a belly, many such problems could simply be written off as IBS.

My feeling is that IBS is simply a wastebasket name for “we don’t know what’s causing it, therefore we will trivialize it.”  Just think about fibromyalgia, and how it was written off for so long as “psychosomatic.”  Now there is a wealth of information about the pathophysiology of the illness; doctors take it seriously and even prescribe medicine for it.  I don’t think IBS is one entity.  I think it is a cheap moniker for a host of different enteric illnesses that have not been adequately described; and on the other hand, it is a convenient way to get rid of a pesky patient who doesn’t have something cut-and-dried like ulcerative colitis or Crohn’s Disease.

Of course I have a personal stake in all this.  Four years ago my immune system crashed.  I got all kinds of weird viruses that you’re not supposed to get in adulthood.  My doctor thought I had AIDS so I had test after test, and after four negative HIV tests they finally decided I didn’t have it.  Then my intestines began to refuse to digest my food.  I lost 30 (yes, thirty) pounds, all the while eating like there was no tomorrow, because I was starving hungry.  My body wasn’t getting any food!  I got vitamin deficient; I developed a rare anemia from lack of folic acid.  I broke my wrist because my bones had become brittle from lack of Vitamin D absorption.  My calcium level was on the floor.  I was in a foreign country at the time, and didn’t understand the language well enough to communicate with the specialists, so many tests went by the wayside.

Being a physician myself (which is not always an advantage when dealing with other physicians’ egos), I put two and three together.  I have had recurrent bouts of bronchitis and pneumonia since I was born.  I had developed malabsorption.  Then I got a nasal polyp, just to complicate matters.

These three items add up to one thing: cystic fibrosis.  At age 55?  I started doing the research.  Yup, it happens.

I got back to the States and cajoled a gastroenterologist into ordering the genetic testing for CF.  Yup. Positive, but in the carrier state.  She sent me to a CF center for a sweat chloride test, which is the gold standard for diagnosing CF.

The test value for absolutely negative is 20.  The value for absolutely positive is 60.  I came in at 58.  Twice, because they couldn’t believe it wasn’t a lab error and repeated it.

They tested my pulmonary function.  I have been a runner all my life, which helps me breathe.  I played wind instruments for 30 years.  I am a singer.  My lung function in 1981 was 150% of normal.  Now it is 110% of normal.  They said I can’t possibly have CF because if you do, your lung function decreases by 2% a year.  Do the math.

In the meantime, one GI doc literally threw a prescription for pancreatic enzymes at me from across his desk, because I was sitting there weeping.  I took them, and magically began digesting my food.  I regained 20 pounds over the next six months on the enzymes. In CF, you lose your own digestive enzymes and have to take them in pills.

Despite all this, when I went back to my GI doc last week for a recheck, she announced that she thinks I “just have IBS.”  I was floored.  I said, What about the fact that taking enzymes fixes it?  She says, Oh, sometimes that can happen.  I said, What about the fact that I have never had any pain?  She made a face.  I said, What about the fact that I lost 30 pounds before starting enzymes?  She snorted and ordered a very invasive and expensive test to look at my pancreatic ducts with an endoscope, and left the room.

Who’s the quack here?

 

“Half in love with easeful death….”

Darkling I listen; and, for many a time

I have been half in love with easeful Death,

Call’d him soft names in many a mused rhyme,

To take into the air my quiet breath;  (Ode to a Nightingale, John Keats)

I’m doing this NaNoWriMo write-a-novel-in-thirty-days thing.  It’s quite an exercise, for a non-fiction writer like me to just throw my hat into a fictitious ring and say, “whatever comes out, comes out.”

Last night after Shabbos I went back into my manuscript frenzy and got over the 5000 word hump.  Then I noticed something odd:  every one of the characters in my novel is modeled after someone in my life who has died violently.  One of my protagonists is even an amalgam of two different men who committed suicide by shooting themselves.

The two children in the plot, I knew from their very beginnings.

The Pretzel Lady cadaver plays herself.  I hope she is now resting in a lot more peace than I gave her, poor thing.  She was my cadaver in medical school.

I wonder if other novelists resort to such macabre strategies, mining their lives for dead people to resurrect?  But surely most people don’t know so many dead people as I do.  Or do they?

I’m not talking about the “normal” kind of death that impacts everyone’s life sooner or later.  It is natural for grandparents, and then parents, to age and die.  It is also natural for people to have long terminal illnesses, and then die.

What I’m talking about is specifically suicide, homicide, and accidental death.  The kind of thing an emergency room doctor sees over and over again.  In fact, when you see these things on a daily basis, they begin to populate your thoughts and your dreams.  So why shouldn’t they populate a novel, should you chance to write one?

It is the most natural thing on earth, for me anyway.  If I need a life to put down on paper, I reach out into my catalog of lives that have been shucked off like overcoats no longer needed.  But I’m sensing that I need to put a stop to this thread, because my mind in its current state could easily begin to perseverate on ideas far more unhealthy than these that I’ve already trotted out.