Almost Alike: A Medical Cautionary Tale

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

• Bronchiectasis (high-resolution CT scan)
• Frequent bowel obstructions (x-ray)
• Central sleep apnea (sleep study)
• Obstructive sleep apnea (sleep study)
• Early-onset gallbladder disease (ultrasound)
• Exotropia (eye exam)
• Gastroparesis (gastric emptying scan)
• GERD – reflux (barium swallow)
• Esophageal motility problems (barium swallow)
• Dysphagia (barium swallow)
• High cholesterol (blood test)
• Hypermobility syndrome (Brighton criteria)
• Myasthenia gravis or related condition (single fiber EMG)
• Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
• Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

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Gastroparesis Awareness Month: A Day In The Life

This is my second post for Gastroparesis Awareness Month.  Read my first post, Tube Love, here.  My first post was a love poem to my feeding tube.  :-)  My second one is a little more serious and a lot longer.  I apologize for the length.  I have trouble reading lengthy posts myself.  But sometimes I’m incapable of summarizing myself, so I have to write posts that are too long for even me to read.  I hope you’ll at least be able to skim through the important parts.  I’ve tried to break up the text with lots of photos, to see if that helps any.

A DAY IN THE LIFE

My day starts when my morning caregiver arrives.  I don’t just have gastroparesis.  I have a variety of physical, cognitive, and developmental disabilities that make it so that I need help to do a lot of things to get through my day.  So there are several times throughout the day when there is a caregiver here, the rest of the time there is one on call at short notice, and my day officially starts when the morning caregiver comes in the door.

My GJ feeding tube

The very first thing we do is start cleaning out my feeding tube.  Nobody taught us to do this.  This is something I learned how to do, in order to avoid having to keep getting it replaced due to clogs.  I push water directly into the j-tube, then I pull it out again, over and over.  Slowly, with the water come what we call “tube worms” — long wormy-looking pieces of food that have gotten stuck inside of the tube and would have caused a clog had we not got them out.  We know the tube is running smoothly when we can push water through it without a certain amount of resistance pushing back at us.  When we near that point, we stop and start concentrating on meds.

The first medication, and one of the most important ones that I take, is called Phenergan.  I call it my butt pill — the medical term is suppository, but I always forget that word, so butt pill it is.  They hand me the pill and a glove, and I turn around and stick it up my butt and wait for it to dissolve.

Me holding a “butt pill” — a Phenergan suppository — in a gloved hand.

Phenergan is one of six nausea medications I take to get through the day.  Different people’s gastroparesis symptoms are different.  Some people’s main symptom is pain and bloating.  Mine is nausea, really bad nausea.  So I am on no less than six nausea meds.   The most important ones are Phenergan, Reglan, and Marinol.  I also take Zofran, Benadryl, and Lorazepam for nausea.

Reglan works by making my digestive system move faster.  The core trait of gastroparesis is that your stomach is partially paralyzed and moves too slow, failing to empty food into your intestines fast enough.  Reglan is one of the few treatments that targets that slowness directly.  Unfortunately I have intolerable side-effects at a full dose of Reglan, so I have to take a half-dose.  I am hoping one day to be able to switch to domperidone, which I would have to order from outside the country.  Domperidone is like Reglan, but it does not cross the blood-brain barrier so it has fewer side-effects.  Not being FDA-approved, however, is a major obstacle to people with gastroparesis in the USA.  It is approved in most other countries, though, so it’s possible to order it, according to my doctors anyway.

Marinol is derived from marijuana.  I was highly skeptical of it at first because of that.  But at the time they suggested it, I was on all five of my other nausea meds and still not able to come home from the hospital.  Marinol often works where all other nausea meds have failed.  It does not generally get you high, although it can have other unpleasant side-effects like anxiety and paranoia.  I luckily have had few side-effects, no high, just a huge reduction in nausea.

Zofran is a nausea medication often given to people on chemotherapy.  I don’t understand what the big deal is supposed to be, though.  Unless I combine it with Benadryl or Lorazepam, it really doesn’t do a lot for me on its own.  And I’ve heard the same from a lot of other people with gastroparesis.  Zofran is a pill that dissolves under my tongue, so I don’t have to swallow it or put it through the tube.  That’s the one benefit is it’s fast-acting and easy to ingest.

Benadryl and Lorazepam are more well known as an allergy medication and an anxiety medication.  However, Benadryl is closely related to Dramamine, a well-known nausea med, and has anti-nausea effects itself.  Lorazepam, likewise, has anti-nausea effects.  These are medications I take for multiple reasons, both the nausea side and the allergy and anxiety side.  I take a fixed dose, but I also can take them PRN, meaning whenever I have extra nausea and need more medication than I would normally take.  Which happens most days.

My caregiver removes the drainage bag from my g-tube.  Overnight, I always wear a drainage bag that drains the contents of my stomach into a bag.  Before I did this, I my bile used to build up in my stomach because it wasn’t getting passed along down to my intestines.  Then it would creep up my esophagus, into my throat, and I’d wake up choking on it.  I’d cough it out for over an hour sometimes, sometimes having to call an ambulance if I had enough trouble breathing.  I have bronchiectasis, a form of COPD that basically ensures any time I aspirate enough stomach fluid, I’m going to get aspiration pneumonia or at least some other lung infection.  So this was a big deal, and it was happening several nights a week.  With the drainage bags, and other drainage practices, I only get aspiration pneumonia a few times a year.  Which is still too much, but it’s a drastic cutback and gives my odds of surviving into old age a much-needed edge.

After we’ve removed my tube feeding pump and cleaned out my tube, we mix up my medications.  Most of my medications are in liquid form, the best form for a j-tube because j-tubes are easily clogged.  We use a syringe to put the medications in.  The j-tube has two syringe ports, one for a small syringe and one for a larger one. You hold closed whichever one you’re not using, or you can get sprayed in the face.

Inserting medication into the small port on my j-tube.

After meds, put Diet Coke into both of the tubes and let it soak for ten minutes or so.  This helps dissolve any clogs.  Hot water is supposed to be as good as coke, so we flush it with hot water afterwards.

Then we do something that polite people call ‘venting’, but the nurse that taught me calls it ‘burping’ and the idea fits.  You open up the g-tube over a cup.  We have a designated green Burp Cup.  I recommend yellow or green cups to camouflage the color of the bile a bit.  What nurses teach you to do, is put the cup under the tube, unclamp the tube, and unscrew the cap.  What’s supposed to happen then is all your stomach fluids flow out of the tube and into the cup.  But it’s not that simple.

My burp cup with some liquid in it, and a syringe in front of it.

Here are some of the things I have to do in order to properly burp enough air and fluid for it to actually empty properly and prevent aspiration.  Some of these things could damage the wrong kind of tube.  So don’t just do something because I wrote about it here.  But here are the kind of things I do during a burp:

• I move the tube in and out.  Pulling it out as far as possible, holding it to see if more fluid or air comes out, then pushing it back in.  Sometimes I move it almost in a pumping motion, sometimes much slower.  I have to be careful, as I do this, not to pull so hard or so far as to actually dislodge the tube.  Every tube is different, and some dislodge more than others.  You have to know your tube well to do this.
• I press on my stomach in different areas, which helps move the bile and air around.
• I swallow a lot of air, which forces the bile out of the tube through air pressure.
• I use my stomach muscles to push.  Almost like you push when you’re on the toilet, except it’s your stomach, not your bowels.
• If there is any solid matter that seems to be getting in the way, such as blood clots (I have an intermittent bleed in my stomach), I stick a bent paperclip inside the g-tube.  I keep one end bent so that it will never get stuck inside the tube.  And I use it to either hold solid matter out of the way so the liquid can get out, or to crush up or move the solid matter around to help it come out.
• I use a syringe to either push water into the tube, or pull bile out of the tube.  This can help when things are stuck.  It can also help to dilute things when the stuff in your stomach is too thick.
• Speaking of diluting things, sometimes I drink a bit of water or ginger ale and then jump up and down to mix it up with my stomach fluids.
• I chew gum.  This seems to stimulate both bile production and gas production, and sometimes this helps move things through or get things thinned out.

Understand that some of these are things that no doctor would ever recommend you do to your tube.  And since each tube is different, what I’m doing above might destroy another type of tube.  So my advice if you have a tube, is get to know your tube really well before you do anything unusual to it, and get to know your body, too.  Some of the things I do could also make a person really sick in the wrong circumstances.  In fact it sometimes makes me sick, if for instance I swallow a lot of air but I can’t get it to come out the tube.

Then we dump the contents of the Burp Cup in the toilet (which is every bit as gross-looking as it sounds), rinse it out a few times and keep dumping that in the toilet, and then fill it up with soapy water and set it on the back of the toilet to soak.  Without the soapy water, it starts to really reek after awhile.

Soon enough it’s time for more medications.  Those work the same way the original ones worked:  They go in through the j-tube.  And this is also where my tube feeding starts.

I’m fed a formula called Osmolite.  It’s basically a pre-mixed formula, it’s the same every day.  It’s beige and it smells and tastes gross, but luckily I don’t have to smell and taste it.  It looks exactly like what we used to feed the baby birds at the wildlife rehab center I used to work at.  Anyway, a j-tube is different from a g-tube in some important ways when it comes to feeding.

A bottle of Osmolite hanging inside of its backpack.

A g-tube goes to your stomach.  Your stomach is designed to take in large quantities of food at once.  That means that your stomach is capable of stretching to accommodate your food.  People who are fed by g-tube can often be fed simply by pushing lots of food in by syringe, all at once.

But a j-tube goes to your intestines.  Your intestines are not able to stretch to accommodate the food you need to eat.  So you need to be fed extremely slowly.  For me, this means I’m on a feeding pump.  It gives me 45 milliliters of food per hour.  Ideally, I would get 90 mL per hour, but that made me really sick, so I use 45.  This means that it takes 24 hours to feed me the whole container of food.  So I have a backpack the feeding pump and the Osmolite live in, so if I have to go anywhere, I can just wear it on my back.

The feeding pump itself is just a little box that attaches to a tube going out from the Osmolite bottle.  The pump slowly moves the food into my intestines, keeping it at a constant rate day in and day out.  I sometimes give myself a few hours of break in the morning, but other than that I am constantly eating, and feel neither full nor empty.

An Enteralite Infinity feeding pump, inside its backpack.

The only time I’ve felt hunger has been since going on steroids for severe adrenal insufficiency.  Steroids can cause such intense food cravings that I end up eating small things and having to drain them out of my g-tube to avoid aspirating them.  I’ve talked to my doctors and they say I’m not to blame for this, because it’s a known side-effect of dexamethasone.  I just have to be careful.

The feeding tube has to be set up properly.  The tube is connected to the Osmolite bottle, wound through the backpack and into the pump, then wound out through another hole in the side of the backpack.  Then it’s plugged into my j-tube.  The settings have to be cleared so the pump knows it’s a new bottle, and not the same old one.  If it thinks it’s the old bottle, it will stop feeding me early.  Then we have to make sure it’s still set to the right feeding speed.  Then we “prime” it by pressing a button to move the food through the tube quickly.  And then we plug the tube into my j-tube and turn it on.

Putting the tube from the Osmolite bottle into the large port on my j-tube.

The Osmolite tube connected to my feeding tube.

If anything goes wrong with the feeding, there are a bunch of different, loud alarms that will go off.  There’s two separate alarms for problems with food flow, one for trouble with food flowing into the pump, one for trouble with food flowing out of it.  There’s another alarm for if it runs out of food, and another alarm for when the feeding is supposed to stop.  And an alarm for if you plugged it in but forgot to turn the pump on.  The main thing they have in common is that they are very loud, annoying, and impossible to ignore.

After my feeding is set up, the next big part of my routine is another butt pill.  I have an alarm clock set for that.  The alarm clock is out of my reach, so in order to get to it I have to move out of my bed.  This is enough of a prompt that usually I can go get the butt pill and insert it into my rectum with no problem.  My problem is with initiating actions, and the alarm clock placed out of my reach helps me initiate.

Standing in the kitchen holding up a butt pill (Phenergan suppository) in its wrapper.

At some point, a different time each day, a licensed nursing assistant (LNA) comes in to help me bathe.  The first thing she does is clean the mucus, and sometimes blood, off of my stoma site (the area where my feeding tube enters my body).  And then we decide how much else of me to wash.  Washing is very painful for me, so I often opt to only wash the most essential parts and put medicated lotions on, and deodorant.  I need help washing because of a movement disorder, although even as a child I was never good at bathing and I went through a lot of pointless and humiliating training about bathing in mental institutions as a teenager.

I don’t have daily mealtimes, because I am eating literally all day and all night.  The closest I have is a series of medication routines, and there are people here who help me perform those.  They involve mixing up medications and putting them into my j-tube in a certain order.  That kind of thing is too complicated for me to do on my own.  I can do maybe one medication, if I’m lucky, but I can’t do the huge number of meds that are required for my daily routine.

The people who come to help me out basically do nearly everything for me.  They either help me do the thing entirely, or they help me get started.  For instance, there are many things that I can’t do on my own, but that I could do if you handed me the materials to do it with.  Like I would not be able to go into the bathroom and pick up deodorant and put it on, but if you hand me the deodorant I can put it on.  This is because of problems initiating associated with my movement disorder.  So I get anything from assistance with starting things, to total assistance, and it all depends on what I need that day.

I wear a drainage bag on my g-tube during afternoons and evenings.  It collects everything from inside my stomach.  It has an accordion that you press down, and as the accordion pulls itself out again, it pulls the liquid and gas out of my stomach.  As long as I keep pressing the accordion as it comes out, it will keep sucking in bile.  Then when someone gets here, they can dump all the bile in the toilet and wash out the drainage bag with vinegar and water.  I have devised a number of ways to keep the drainage bag in good shape so that I can use it over and over again for months at best, even though they are single use only.  They cost $80 and aren’t covered by insurance, so we have to be creative.

Drainage bag connected to my g-tube, contents pretty full.

The evening routine is much like the morning routine, including burping the g-tube manually, and a lot of medications at different times.  There’s also a bunch of things, like physical therapy, that don’t have much to do with the gastroparesis or feeding tube at all.  I’ve needed services to survive for longer than I’ve had gastroparesis, and I’d still need them even if I didn’t have gastroparesis.  It’s just that right now, a good deal of my daily routine does revolve around gastroparesis.

Night is the scariest time for me with gastroparesis.  This is the time when I am most likely to aspirate.  What happens is usually that something goes wrong with the drainage bag, and it isn’t draining as much as it should.  This usually means a blood clot or something is stuck in the tube, preventing bile from exiting my stomach.  So the bile goes up into my esophagus.  I have central and obstructive sleep apnea and sleep with a bipap machine that blows air into my lungs.  When the bile goes into my esophagus, the bipap blows it down into my lungs.  I wake up choking and coughing.

Me wearing my bipap mask at night.

Then, I usually spend at least an hour coughing up bile.  If it’s bad enough that I can’t breathe, I have to call 911.  But often I just sit on the bathroom floor with a wad of tissues and cough up bile and throw them away as fast as humanly possible, trying to get it all out of my lungs.  I have a condition called bronchiectasis that makes it easy for me to get lung infections and hard for me to clear lung infections.  So every time I have a bad enough aspiration, I have to go on antibiotics immediately.  The goal is to prevent aspiration pneumonia, although usually I get aspiration pneumonia anyway and the antibiotics just help me fight it off in the end.  Right now, as I’m writing this, I have aspiration pneumonia for the second time in the past year.  But I’m doing better than ever because I’m able to treat it properly now.

But the good news is that with the feeding tube, I’ve gone from aspirating several nights a week, to aspirating several nights a year.  Any aspiration is too much aspiration, but with the feeding tube I have the chance to live a lot longer than I was going to live without it.

The very last thing that happens in my day is a very early-morning phone call and alarm clock.  It’s the Phenergan suppository again.  That Phenergan suppository is the bedrock of my anti-nausea regime, and it’s vital that I get every single dose.  The Phenergan, Reglan, and Marinol are the most important nausea meds and I never skip a dose, ever.  It gets to the point that I look forward to sticking that Phenergan pill up my butt because I know how much better I’ll feel afterwards.  And as someone who doesn’t like anything put up any orifice where it doesn’t belong, that says a lot.

ABOUT GASTROPARESIS

Gastroparesis is a really weird disease in some ways.  One of the weirdest parts of it, is that the severity of your symptoms has no correlation to the severity of your delayed stomach emptying.  So someone can have a severe stomach emptying delay but barely any symptoms.  Someone else can have a mild stomach emptying delay but very severe symptoms.  I’m someone who has (as far as we could determine) a mild to moderate stomach emptying delay, but severe enough symptoms that I require a feeding tube both for the nutrition and to avoid aspiration.

Also, different people have different symptoms.  Here is a description of gastroparesis taken from one of the common gastroparesis awareness ribbons:

Paralysis of the stomach that is estimated to affect 5 million Americans with no cure and few treatments.  Foods eaten take hours or even days to leave the stomach leading to nausea, pain, vomiting, malnutrition, bloating, weight issues, and more.  It does not mean that you are not hungry… it means that you are starving but cannot eat the food right in front of you.

Another awareness ribbon reads:

Gastroparesis is a rare, debilitating disease that literally means paralysis of the stomach.  When someone with Gastroparesis eats, the food stays in their stomach for hours or even days.  Symptoms of Gastroparesis include = Severe abdominal pain, gastro reflux, vomiting, nausea, feeling full after eating very little, bloating, heartburn, unintentional weight gain, unintentional weight loss, malnutrition and much more.  There is currently very few treatments and no known cure for Gastroparesis.

But even within those lists of symptoms, different people experience different things.  Some people lose a lot of weight.  I lost a total of 70 pounds overall.  Other people gain a lot of weight, or lose weight and then gain it back again as their body enters starvation mode and tries to hang onto what calories it can.  Some people’s main symptom is pain and bloating.  My main symptom is nausea and loss of appetite.  I had such severe nausea that even before I got the feeding tube, I couldn’t make myself drink enough Ensure to survive, until they put me on six different nausea medications.

MY VIEW FROM THE SUPPORT GROUPS

Something I see very often in the online support groups, is people getting substandard care for gastroparesis.  Their doctors don’t understand gastroparesis, so they don’t understand how to treat it.

One of the biggest mistakes doctors make is to assume that the person’s symptoms will only be as bad as the delay in stomach emptying.  As I mentioned earlier, severity of symptoms is, for reasons not entirely understood, not well-correlated with the delay in stomach emptying.  It may be that there are other things, like problems with the vagus nerve, that cause the more severe symptoms some people report even when their stomach is emptying relatively fast for a person with gastroparesis.

But at any rate, I see way too many people struggling to keep enough food down to maintain a healthy weight, but being told by doctors that everything is okay because their emptying delay is not very severe.

I also see a lot of people whose doctors give up on nausea medication before they even start.  Just to give you a clue, this is what my nausea medication looks like.

Every day, I take six different nausea medications.  I take Reglan (which is not just a nausea medication, but also speeds up your stomach), I take Zofran, I take Phenergan suppositories, I take Marinol, I take Benadryl, and I take Ativan.  You may not know that Benadryl and Ativan treat nausea, but they do.  And it is the combination of those medications that got me out of a five-week-long hospital stay a couple years ago.  Marinol was the final addition.  I had been afraid to take it because it’s derived from marijuana, but it doesn’t get me high and I have no real side-effects from it.  Marinol often helps people with nausea who can’t be helped by any other medication, and I fell into that category.  I was already on five medications, which were helping somewhat, but only the addition of Marinol allowed me to leave the hospital without a feeding tube, and stay home without a feeding tube for several months.

All of my nausea meds: Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Phenadoz (Phenergan), and Ondansetron (Zofran).

What I see happening to other people, though?  Their doctor offers them a little Zofran or Reglan, maybe both if they’re lucky.  Then, if they don’t improve sufficiently, they’re told they are out of luck, and there’s nothing more the doctor can do.  I understand the risks of prescribing six different medications that are all sedating in their own ways.  But it’s also a huge risk to allow your patient to starve to death because they can’t keep food down.  Many times these are people who won’t need feeding tubes, people who won’t need any drastic interventions, all they need is something to keep the nausea under control.  And their doctors won’t experiment with combinations of drugs for that.  They just give up after the first one or two fail.

I also see a lot of people whose doctors simply don’t know much about gastroparesis and won’t do much to find out about it.  So they won’t get referred for the best treatments, or they’ll get referred to a specialist who also doesn’t know much about gastroparesis.  And they’ll get passed around in circles by doctors who don’t know what to do with them, getting sicker and sicker along the way.

People who have multiple health conditions tend to have the most trouble getting good healthcare, and gastroparesis is often the results of another health condition.  Diabetes is a common cause of gastroparesis.  Some eating disorders can result in gastroparesis.  In my case, we suspect it’s caused by an autonomic neuropathy that runs in my family.  But we don’t know.  When I was diagnosed with severe secondary adrenal insufficiency, we had a lot of hope that the gastroparesis symptoms would go away, because adrenal insufficiency can mimic gastroparesis.  But the symptoms didn’t go away.  I gained a little weight back on steroids, but that’s all.  Now we’ve found out through single-fiber EMG testing that my mother and I have a neuromuscular junction disease, probably something like myasthenia gravis.  We also have some form of hypermobility syndrome, which can sometimes be tied to a connective tissue disorder, which sometimes can be tied to gastroparesis.

And I’ve noticed among the support groups that most people with gastroparesis are like me:  They have a complicated medical history with a good deal of diagnoses that are connected in ways that aren’t fully understood.  There’s people with mitochondrial disease, there’s people with Ehlers Danlos and related syndromes, there’s people with eating disorders, there’s people with adrenal insufficiency, there’s people with diabetes, there’s people with neuromuscular junction diseases, there’s people with autonomic dysfunction, and there’s even people with several of these things at once.  And the more things we have, the less our doctors seem to understand what’s going on.  I’m lucky to have a dedicated team of specialists for all of my conditions, who are willing to work together to keep me alive.  Without them I wouldn’t be here right now.

There have always been some doctors who felt like my life wasn’t worth saving, or that things weren’t as bad as they actually were.  The doctors I’ve kept are the ones who have done the lung x-rays and CAT scans to prove I had pneumonia and bronchiectasis, the ones who did the gastric emptying studies to prove I had gastroparesis, the ones who did the blood tests to prove I had adrenal insufficiency, the ones who did the EMG to prove I had a myasthenia-like syndrome.  Basically, the ones who have gone out and gotten the proof to fight anyone who says either “This kind of patient isn’t worth keeping alive,” or “She’s exaggerating her symptoms, it can’t be that bad,” or “She’ll never be able to take care of a feeding tube anyway.”

WHY AWARENESS?

I’m not usually a big fan of awareness days, awareness months, and that kind of thing.  But there are things I make an exception for, and gastroparesis is one of them.

I went for years with gastroparesis symptoms before I was properly diagnosed and treated.  In fact, the first time I was hospitalized for gastroparesis, was something like five years before I was diagnosed.  They put me on medications for “chronic nausea” and didn’t do any further looking for the source of the nausea.

If I had been diagnosed and treated earlier, there’s a chance that it would never have gotten as bad as it is now.  There’s a chance that I wouldn’t need a feeding tube, that I wouldn’t have gotten aspiration pneumonia eight times in one year, that I wouldn’t have entered adrenal crisis from the illnesses that followed that.

Because for someone with a complex medical history, one thing is never just one thing.  Gastroparesis causes me to have bad reflux.  The treatments I use for sleep apnea cause me to aspirate that reflux at a higher rate than normal.  Bronchiectasis causes that aspiration to result in pneumonia pretty much every time.  Adrenal insufficiency means that getting sick with pneumonia puts me into adrenal crisis without treatment.  Everything builds on each other until it’s actually pretty surprising that I’m alive at this point.

Gastroparesis can be pretty bad even if you don’t have a complicated medical history.  But as I said above, most people I know with gastroparesis do have a complicated medical history.  Whether it’s eating disorders, diabetes, mitochondrial dysfunction, adrenal insufficiency, Ehlers Danlos, autonomic dysfunction, or some unholy union of many of these things, people with gastroparesis rarely seem to come with just one disease.  And that makes it even more important that people know what gastroparesis is, and what it looks like, so they can do something about it.

By the time I was diagnosed, I had been living on grits, crackers, and broth for weeks and had lost forty pounds.  They didn’t believe me about how little I was eating until they saw me fail to eat anything at all for weeks in the hospital.  In their eyes, a fat person must be eating, even if that fat person was losing catastrophic amounts of weight.  It’s even worse for people with gastroparesis who experience weight gain as part of the symptoms, because anyone who has eating problems and is gaining weight has less likelihood of being believed by doctors, even though medicine knows perfectly well why this happens.

There were a few things that should have been big red flags for me, but I simply didn’t know enough to understand their significance.

One of them was that when I threw up, I would often throw up food from a long time ago.  Like from up to three days ago.  I just kind of assumed that the food was coming from somewhere really far down my digestive tract, but it was actually sitting in my stomach all that time.

Another one was that I always felt better if I didn’t eat, or barely ate, for days at a time.  There were times when I’d live on small amounts of broth, oatmeal, and grits for weeks or months at a time, and I always felt much healthier afterwards.  Most people don’t feel healthier after barely eating anything for a long time.

The constant nausea should have been a red flag, too.  But I was so used to weird symptoms that I honestly didn’t even think to classify that as especially weird.

Also, I had motility problems in other areas of my gut.  Ever since childhood, I had bad constipation, sometimes to the point of bowel impaction and blockages requiring emergency room trips and hospitalizations.  As an adult, they found that my esophagus had reduced motility as well, that it didn’t move food as fast as it should.  So my bowels move slowly, my esophagus moves slowly, it shouldn’t be a surprise that my stomach moves slowly as well.  But for some reason they never looked at that until that five-week hospitalization.

And what happened during that five-week hospitalization?  I’d aspirated again and gotten pneumonia.  I was very weak from not eating, from myasthenia-related reactions to vomiting, and from an impending adrenal crisis.  And I demanded that they keep me in the hospital until they figure out why I couldn’t eat, and figured out a way for me to get adequate nutrition again.

They got serious about it then.  They diagnosed the gastroparesis, although they wouldn’t do the final testing for another couple months.  They started me on that intense nausea medication regime.  They tried a bunch of antibiotics that are supposed to speed up your gut, but they just made me more nauseated.  And they started seriously considering a feeding tube.  Marinol is the only reason I didn’t get a feeding tube right then and there, from what I’m told.

At any rate, if you want to know more about gastroparesis, I’d urge you to visit the G-PACT (Gastroparesis Patient Association for Cures and Treatments) website, which deals with gastroparesis and related motility disorders and digestive tract paralysis.  If this sounds like you or anyone you know, please get help, because the longer you go without treatment, the less they can do in the end.  There aren’t a lot of treatments for gastroparesis, and the more extreme the gastroparesis, the more extreme and invasive the treatment is.  So you want to know if you have it, as early as possible.  The treatment I have — a feeding tube — is actually middle-of-the-road for gastroparesis treatments.  It’s invasive, but it can be removed, and you can still eat if you have one.  The most invasive treatments involve things like a stomach pacemaker, or removing your stomach entirely.  So you don’t want it to get that bad before you get treatment.

And it’s one of those diseases nobody seems to have heard about.  Which is one reason that I think awareness is important.  I know that the disability rights movement has a million different critiques of awareness, including the idea that it pits different diseases against each other.  But if I had simply known a few years before, what I learned when I was diagnosed, I could have been spared a lot.  I’m lucky to be alive, given the combination of diseases I have, and I’m far from the only person with gastroparesis whose health is fragile like that.  So I think it’s more important to get the word out than to do what the disability rights movement tells me to do about awareness months.  For things like this, awareness months are really important, because we haven’t got any other way of spreading the word to people who need to hear it.  If any of what I’ve written here, or in my last post, helps even one person, that will be enough.

Tube Love

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

Fat people and feeding tubes.

This isn’t a post I like to write.  The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat.  Except they usually go beyond calling me fat.  They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse.  In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have.  It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions.  They are here to take pot shots at my weight, and to imply that I’m not really sick.

But the thing is, even people who are not bullies have questions like this in their minds sometimes.  And many people who are fat themselves, can be slow in recognizing that they have a disease.  And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has.  So understand when I’m writing this… the bullies didn’t goad me into writing it.  I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.

And because fat people die every single day due to inadequate healthcare:

• When we get sick it’s recognized less often.
• We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
• If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer.  (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
• If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain.  (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
• Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.

These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones.  To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.

So here’s the thing:  I have gastroparesis.  That’s a partially paralyzed stomach.  It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system.  It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach.  Mine stayed in my stomach too long, therefore I have gastroparesis.  End of story, there’s no arguing with that.

Symptoms of gastroparesis are a weird thing.  With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is.  Gastroparesis is different.  You can have severe symptoms with fairly mild slowing of the stomach.  You can have very mild symptoms in a stomach that’s almost stopped altogether.  Nobody knows why this is.

Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat),  feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain.  (More on that later.)

I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer.  When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits.  Then I got aspiration pneumonia from the associated reflux.  Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.

Being fat delayed my treatment.

People have this bizarre view that if a person loses weight, they just go from fat to skinny.  They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny.  So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me.  They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster.  Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office.  They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart.  It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat.  Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin.  But it took seeing me failing to eat every day before that knowledge could break through their own biases.

So they embarked on a program to bring my weight up.  Yes, I said bring my weight up.  Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment.  The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight.  That’s not how human physiology works.

They put me on every nausea medication they possibly could.  I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol.  Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube.  They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future.  But they were able to send me home on a diet of Ensure Plus and lots of nausea meds.  It worked for a few months.

But my gastroparesis symptoms only got worse.  They were getting worse in two areas.  One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot.  The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year.  With bronchiectasis to make things even worse, the pneumonia was going to kill me.  Secondly, I was losing weight again.  I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day.  It went down that fast within a couple of weeks.

So they agreed I needed a feeding tube if I were to survive.  They didn’t agree that I should want to survive, but that’s another story I’ve told before.  They did agree that I needed a feeding tube in order to survive.  And eventually I got that feeding tube.

The thing about feeding tubes, for any skeptics out there?  Is that they don’t give them out to people who don’t need them.  Yes, everyone has heard of rich women who diet by using nasogastric tubes.  But this isn’t a nasogastric tube, it’s a GJ tube.  And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid.  Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one.  Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one.  Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.

The above feeding tube?  Only way to get it is because it’s medically necessary.

So why is a feeding tube medically necessary in a fat person?

Because feeding tubes are given for a very wide range of problems.  In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.

1.  I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy.  My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.

2.  I aspirate stomach fluid, which can be drained out of one half of my feeding tube.  Continued aspirations would result in repeated infections until eventual death.

It’s the first one people don’t seem to grasp.

I’ll make it very simple:  You can die from complications of rapid weight loss, before you ever become thin.  You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin.  And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.

Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat.  My body had a lot of problems and I never even made it to thin.

I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss.  My goal should not be weight gain either.  My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there.  Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.

For what it’s worth, right now I weigh 178 pounds.  That is 67 pounds lighter than I weighed when all of this started.  Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem.  That is how every medical professional in my life has treated the matter.

The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures.  Offline, people are constantly asking me about having lost weight.  It’s not subtle.  It’s not even close to subtle.  My clothes hang off of me.  My pants and skirts fall down if I don’t use belts or suspenders.  My entire facial shape has changed.  Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight.  Medical professionals express extreme worry about the amount of weight I’ve lost.  I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.

Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.

I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.

But back to weight and gastroparesis.

Not only is it not true that only thin people get gastroparesis.  Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with.  But gastroparesis can actually cause weight gain.

It works like this:

Gastroparesis causes the amount of calories that you get, to be restricted.

Your body at first loses weight.

Then your body goes into starvation mode.  It notices that there are fewer calories.  So it begins trying to hang onto every single calorie for dear life.

At which point your body gains weight again.

That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.

So “How can you have gastroparesis?  You’re fat!”  Doesn’t work on so many levels.

But this kind of thinking kills fat people who have diseases like this one.  It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough.  It kills fat people in general.  The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease.  And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well.  Every.  Single.  Day.

I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway.  The only food I take in is a nutritional supplement called Osmolite.  It’s pre-mixed to be a certain number of calories a day.  I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500.  There is no other source of food for me.  Any food I don’t eat by the end of the day is poured down the drain.  Literally everything comes through the feeding tube.  So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about.  For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties.  And it’s honestly none of your business.

So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post.   If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.

Because the need for a feeding tube comes most often when someone can’t eat.  When a fat person can’t eat, that is as dangerous as when a thin person can’t eat.  You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency.  And this is why plenty of fat people have feeding tubes.

We may have feeding tubes because we can’t swallow.  We may have feeding tubes because we choke on our food.  We may have feeding tubes to bypass a stomach that doesn’t work.  We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us.  We may have feeding tubes because our esophagus doesn’t work.  We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat.  All of these things are just as serious problems in a fat person as in a thin person.

I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people.  Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight.  You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.

But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube.  And most of those dozens of reasons do not have a weight limit.  So please don’t bully and harass fat people for having feeding tubes.  And if you see someone you know doing the bullying and harassing, set the record straight.  Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason.  And the same is true for anyone else with a G tube, J tube, or GJ tube.  These are serious surgical procedures that are never undertaken lightly.

As for the bullies, I hope I never have to live in a world where they run my medical care.  I can just see them “You lost 70 pounds rapidly without trying?  Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!”  It’s ludicrous.  And deadly.  All of these attitudes contribute to the deaths of fat people with genuine health problems.  And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.

A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious.  Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”.  Nor will I accept comments from bullies.  This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about.  Anything else will be deleted.  Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…”  This isn’t the time or the place for that crap, please respect that.  This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.

P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people.  Every one of you who targets me in this way has to know that in your heart.  Have that on your conscience, if you have enough of one to bleed through all your cruelty.  When it’s your turn to face yourself for who you are, you’ll have to answer for things like that.  I hope you can manage.

 

I am not your fairy tale miracle cure story.

But more on that in a minute.

In the past couple years, I’ve been quietly preparing to die.  I hadn’t told anyone the full extent of what was going wrong with my body, because it was inexplicable.  Whenever I aspirated and got an infection, I became much weaker than the infection should have made me.  Sometimes I became severely weakened by stress alone.  I knew that there was something going on above and beyond the medical conditions we were aware of.  But I also knew that my symptoms could come from so many different things, it was unlikely we’d ever find it, or that it would be something treatable.

In parts of the chronic illness community, people use a term called ‘spoons’ to describe how much energy you have to do basic things.  I have mixed feelings about the idea, and the Spoon Theory story that originated the practice.  But sometimes it’s a useful thing.  What happened when I got sick was that my spoons would go negative.

When I say negative spoons, I’m not just saying I really didn’t have much energy.  I don’t mean that I felt sick and tired in any way that even the average chronically ill person feels sick and tired.  I mean that I felt like my level of energy was spiraling downwards in a dangerous way.  Where the less energy I had, the less energy I had to replenish it.  At my worst, I would be lying in a hospital bed, going in and out of delirium, and in lucid moments I would notice that it took too much energy just to keep my heart going.  I’d wish that I could stop and rest.  And then I’d realize what that meant.

When I was not acutely ill, I had a constant, subtle sense of fragility.  It felt like one good illness could put me in the hospital or kill me.  And often it did.  I had four hospitalizations between late 2012 and early 2013.  More recently, I was having periods of time when for no reason at all, I’d become unable to move or stay conscious for long.  I knew something was badly wrong.  And apparently so did my doctor, because he started sending me to more specialists and running tests.

This was the result:

Results of cortisol tests, showing cortisol too low to measure, ACTH too low to measure, and cortisol rising up to 8 and 9 when my system was artificially flooded with ACTH.

What does this mean?  When they measured the level of cortisol in my blood, it was consistently too low to be measured.   ACTH is a hormone secreted by the pituitary gland that tells the adrenal glands to make cortisol.  My ACTH was too low to be measured as well.  When they flooded my system with ACTH, I made some cortisol, but not as much as they might have expected.

And what does that mean?  It means that my pituitary gland isn’t making enough ACTH, and hasn’t been for a long time.  And that my adrenal glands have therefore not been making enough cortisol.  I have something called severe secondary adrenal insufficiency.  We don’t know the cause yet.  But the upshot is that it’s extremely treatable.  I’m on a steroid called dexamethasone, that replaces the cortisol my body can’t make.

That health crash I had six years ago?  The one I worked hard to conceal until after the worst was over, because I was afraid of being bullied for having too many medical conditions?  Where every single health condition I had took a nosedive, I ended up bedridden, and needing a power chair, and all kinds of changes took place?  We now think that was the time that the adrenal insufficiency became serious.  It may have been around for quite some time after that.  And if we hadn’t treated it, my expectation that I wouldn’t live to see forty, may well have been accurate.

On dexamethasone, I improved rapidly.

Prior to dexamethasone, I could not jump even when holding onto a grab rail.  On dexamethasone, I could do jumping jacks.  First five, then ten, then twenty, then forty.  Before, I couldn’t walk up one flight of stairs.  Now I can walk up and down eleven.  I’m walking everywhere with a cane now, and barely even needing to use the manual wheelchair I bought (thinking that it was more realistic that I’d need a manual wheelchair than that I’d start walking everywhere — I still do need it sometimes, but not that often). I can do 400 meters on a treadmill, I am starting to be able to run (my legs wouldn’t even move that way before) and skip and balance on one foot, and all kinds of other things I thought I’d lost forever.  I’m going on walks in my neighborhood.

Perhaps most amazing is the way I feel after exercising.  In my entire adult life, I have never felt this way:  When I exercise, I feel invigorated afterwards.  I feel more energetic after exercising than before.  This is entirely different than before, when even minor exercise made me throw up, collapse, or both, and could leave me sick and with my body temperature running high and low for weeks.

And this is amazing and magical and wonderful.

But every time I try to talk about this with a nondisabled person, or even with many disabled people, I run into a very ableist way of thinking about this:  The miracle cure story.

It runs sort of like this:  A disabled person has been hanging in the balance between cure and death (because what other possibilities are there for a disabled life?).  Hope means finding a cure, despair means not finding a cure.  They do find a cure and everyone rejoices and everything goes back to how it should’ve been (with them not disabled, of course) and things are great from there on out.

So I run into a lot of people suggesting to me that I’ve “found hope” (I haven’t).  Or that I’m “cured” (I’m not).

Here’s the reality:

I will be on steroids for the rest of my life, according to my doctors.  If I don’t take them, everything goes back to how it was and I would eventually die.

I have to keep injectable steroids around, because it’s that important that I get them every single day, even if I have a stomach bug or a clogged feeding tube.  I don’t have any other meds where it’s so important that the doctor has insisted on injectables.  Even meds that are dangerous to go off quickly.

Any time that I become stressed out or sick, my symptoms come back and I have to take more steroids.  This puts me at higher risk when sick, hospitalized, injured, or severely stressed out.  To give an example, when I found out my mom had been in the ICU, I went from feeling great, to too weak to breathe easily, in a matter of seconds.  And when I run down my stress hormones like that, I don’t make new ones, so I have to put them back artificially, it’s called ‘stress dosing’.

I have to be constantly aware of my body and of my stress levels and other factors that affect how much steroids to take.  And I have to largely play it by ear.  There is no blood test to tell you if you’re on enough steroids or not.  You have to learn that yourself.

I’m still autistic.  I still have a variety of other conditions, although some of them are much less severe now that I’m on steroids.  I still need a feeding tube.  I still need to communicate by typing.  I still need a wheelchair sometimes.  I still have stamina problems, just not as severe as before.   I still have severe chronic pain, which is getting worse as I try to train my body to move around instead of lying propped up in bed all the time.  I still have autonomic dysfunction.  I still have hypermobility syndrome.  I still have gastroparesis and bronchiectasis and the hellish interactions between them.

And even though it’s under control, I still have severe adrenal insufficiency.  Having something controlled by medication is great, but it’s not a cure.  A cure would mean I wouldn’t need to take medication, wouldn’t need to watch my stress levels and illnesses very carefully, wouldn’t need to be constantly alert to changes in my body.

This is wonderful, but an inspirational fairytale ending it ain’t.