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.

GJ feeding tube

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.



28 responses »

  1. Good post.

    Having plenty of fat doesn’t mean that you have enough protein, vitamins & minerals, nor that you’re able to use that fat. Fat storage is controlled by hormones, not calories.

  2. As a fat person who has experienced a great deal of resistance and stupidity from doctors and laymen alike, I empathize with you. People frequently harass me for using a wheelchair, as if fat people never get disorders or diseases that require one. In fact, currently I’m in a snit with my GP, because I developed serious shortness of breath in a short amount of time, and whereas specialists are thinking it is a kidney or pulmonary issue, she is convinced it is deconditioning from overuse of the chair. Which translates to “Get up and walk, fattie.”

    I would really like to reblog this to my chronic illness blog, but because it was difficult for you to write and is a vulnerable piece, I want to ask for your permission.

    • You’ve got my permission.

      And your situation with your doctor sounds horrible. I have a friend who’s much fatter than me and uses a powerchair because of a combination of an autoimmune disease and a really nasty spine (her only remaining vertebrae are partially dislocated), and people routinely assume she uses the chair because she’s “fat and lazy”.

      I had the “fat and lazy” crop up when my gallbladder needed to go… my GI doctor didn’t even examine me, he just told me to be more active and that the problem was constipation from inactivity. I asked him “what if it isn’t that?” and he said “It is for everyone else!” and stormed out of the room. He slammed the door in my face. As it turned out, my gallbladder had produced two large stones and then failed completely, and by the time they got it out it was an emergency situation that should’ve been dealt with years ago. When the surgeon heard what the GI doctor had done, he sent him a long copy of his surgical report along with a letter.

      I remember reading from someone online that her mother had died because she was fat and had been treated so badly by doctors that she refused to see one, even when she got cancer.

      It’s reasons like that, that regardless of how vulnerable it was to write this, I definitely don’t mind you reblogging it.

      • Thank you. Yeah, currently my issue is that I’ve (super obviously) gained 50-60lbs in the span of a month, and it took three specialists and two CT scans before they’d stop telling me I was just eating poorly. (Ask my girl – I suffer from nausea and lack of appetite; she’s happy when I am willing to eat!) Turns out I’m loaded down with fluid, which is clearly imaged on CT. But like everyone else, specialists only make new patient appointments 2 months from now, and I keep getting told I should have been admitted already, but that insurance won’t cover it unless I present at ER. It’s freaking ridiculous.

        So yeah. Empathy. If having a candle lit in hope of alleviating some of your medical and social obstacles would be welcome, I’m more than happy to do so.

    • ” People frequently harass me for using a wheelchair, as if fat people never get disorders or diseases that require one. ”

      I hate this attitude, and I’m not even visually heavy enough or disabled enough (yet, knock on wood) to get it myself. But, my mother has a combination of disabilities – previous damage to her spine from a fall, arthritis in her knees and elsewhere, and fibromyalgia – that make it physically hard for her to walk any sort of long distance, heck, make it hard some days for her to get out of bed. Even short distances, she needs canes (plural!) to walk. When she does any kind of long-distance “walking” such as in stores or at work (yes, she still works, because they “have a mortgage to pay”), she needs a motorized scooter to do it.

      And there is this little section of our local newspaper that has this short-form rants from readers bit. And I saw someone in it complain about “Fat people in grocery stores” riding the electric carts, basically using the old “just stop eating so much” chestnut. Now, I have ADHD which makes my memory a crapshoot and my sense of time especially bad so I don’t know how long ago – weeks? months?? – this was, but it’s been bugging me ever since. It’s been like, festering inside me and I’m actually debating responding even though it’s probably been ages, because all I could think of when I read that, was my mother.

      Because my mother? She’s “overweight”, you see. She’s heavyset and always has been, and would be called “fat” by most people on sight. But she gained the most weight AFTER her disabilities started piling up! She needs the scooter for the same REASON she’s “fat” – because she’s genuinely disabled! And since she always carries her canes with her even while riding the scooter, maybe, just maybe, people can tell she “really needs it”, but.

      I always think about the people who assume all her problems must surely be because of her weight and not the other way around – the people who don’t know fibromyalgia affects people regardless of weight and causes pain that makes ANYTHING excruciating some days, the people who don’t realize arthritis has little if anything to do with weight, that it’s just inflammation which can affect anyone for zero reason and in her case it’s probably from age (she’s 65+ but because of the weight and dyeing her hair, looks younger than that), that the fall was a result of a chair rolling out from under her because it had wheels and she misjudged the distance and knocked it out of the way accidentally like anybody could, NOT because of any other reason – and those people, who don’t know her, probably assume all her health problems are “her own fault, because she just ate too much”.

      When the opposite, if anything, is true – instead, she’s always been insecure about her weight, to the extent that she frequently diets and counts calories etc. When I, as MANY people do when they hit their 30s, managed to put on about 20 lbs over time, after the original Freshman 15 of course, she started trying to have unwanted “talks” with me about eating and exercise. Yes, really – she’s so insecure that she’s projecting it onto me, who weighs much less (155 was the most I’ve hit – I’ve always been petite – and I’ve dropped weight since then, due, *ding ding sound*, to a medical issue! Not one that’s as dramatic as the OP’s, thank goodness, just a spine thing that made it painful to sit for months, but. It was enough to drain my body’s fat reserves a little at the time. My mother complimented me on the “weight loss” of maybe 10 lbs, and all I could think was “yeah, thanks, but it’d be great if it was from actual normal increased activity like running or something, and not just that it HURT TO SIT DOWN, on account of my feet have been killin’ me for weeks! I’d much rather have the extra ten pounds and a spine that didn’t hurt!”)

      It’s just…it’s so ugly. The worst part is the way the medical industry has become unhealthily complicit in it; for instance, their reliance on the original bullpucky BMI scale. According to the BMI scale, I was “overweight” for my height and sex when I hit 155 pounds…and yet, actual metastudies have shown that being “overweight” or even “obese” by the BMI scale, has ZERO negative impact on your health until you literally hit the “morbidly obese” category; in fact, it’s the opposite! People who are moderately overweight have BETTER health outcomes if they get hit with a serious illness (cancer, pneumonia etc) or injury (spine injuries, broken limbs, etc.). Why?

      Because cases like that are exactly WHY we gain fat to begin with: to provide Emergency Fuel when we need it. And since there’s actually zero causation found between being “moderately overweight” or even slightly “obese”, and illness, especially given that the BMI scale DOES NOT differentiate between mass from fat and mass from muscle (muscle being twice as dense and therefore having twice as much mass!)…literally, there’s no dang reason we should be worried about being a little “overweight”. The whole idea that people like me – people who weigh all of 150 pounds as an adult – are “over” weight, itself, is false; rather, I’m exactly the kind of weight I probably should be as I hit lower-middle-age and start having the usual complications from aging that could require the excess fat reserves!

      In other words, according to BMI, I am an “unhealthy” weight, I have “too much” weight…but according to actual SCIENCE, I’m perfectly fine weight-wise, even better off, because if I get hurt or sick like I did a few months back, it’s less immediately dangerous. But guess which one the culture, and therefore even a lot of doctors and nurses, zero in on? Yup: the outdated, inaccurate, and entirely useless BMI scale.

      Yet if I weighed the supposedly “healthier” weight that I weighed in high school (110-115lbs and this is with a relatively generous bust adding on to that I might add), and then lost that ten pounds from the spinal thing? That would be alarming! Losing ten pounds when you weigh 155 is fine…well, I mean, it won’t kill you in and of itself (why you’re losing it would be of greater worry obviously). Losing ten pounds when you weigh 110 though? Is losing a whole eleventh of your body weight! That’s pretty dramatic, thanks.

      And it sucks, because when I did lose that little bit of weight recently, and realized “oh! I can fit into/look better in some of my old clothing again!” I was happy!

      And then I realized: the only reason I lost it is because I was SUFFERING, from an injury that caused me months of pain and discomfort doing a simple thing like sitting in a chair (and the reason I had first gained the weight was probably because I was less active…because when you live in a third-floor walk up for three years and have to leave it almost every day to work, you get home and you don’t exactly want to go for a run or a swim, do you?). If it had been from a decision to be more active for my own health, that’d be one thing, but it’s like…I don’t get to be “proud” of having stood for hours longer every day if the only reason was because sitting hurt worse than standing. >_>

      So even though I had a change that society approves of (losing a bit of weight), the reason doesn’t get to help my self-esteem any, and if anything society’s reaction would probably be “well see? This just proves you should have been more active and regularly exercising, even though you were totally exhausted all the time and barely had the energy to cook healthy meals for your household, let alone the energy to exercise”. It’s such an ugly cultural construct. I’m glad for posts like this because we need to call out this crap, we really do. It’s created such a toxic, unhealthy culture that outright causes suffering, and even literal deaths.

  3. Reblogged this on Dying for a Diagnosis and commented:
    The following is an incredibly well executed essay on how doctors, naturopath, and Internet hoo-has completely misunderstand the role of weight, obesity, and nourishment in fat patients. Long time readers of my blog will hear echoes of things I have written about here, but I appreciate the ability to share someone else’s story, especially when that story took courage and steadfastness to post.

  4. Wow. Thank you for sharing. I am 278, size 18 or 22 depending on the brand. I weight lift and enjoy it. My blood pressure and cholesterol are at healthy levels. I can take down a 6ft 200+ man. I consume maybe 1700 calories a day. But people don’t know that. They make assumptions built on a perverted system that is centuries old. Thank you for writing this. It was informative and therapeutic.

  5. Worry my stomach does this in phases. I think I mentioned it to you months ago on tumblr. Maybe not. I have stretches of a few days where my stomach seems to behave how it should, a few days where my stomach and or intestines are in overdrive and I have to double up on anti-spasmodic meds, and a few days of everything slowing down with decreased or no appetite and not seeing evidence my body digested something until 2-3 days later. Worry this, whatever it is, might put me at risk for gastroparesis later on.

    Learned a lot about some potential consequences of losing weight the *wrong*/scary way. Had no idea it could damage heart muscle, too.

    When you were losing weight, did you lose heart muscle? Sorry if you mentioned it above and I missed it.

  6. Pingback: Sunday links, 5/18/14 | Tutus And Tiny Hats

  7. Hey there,

    I just wanted to thank you for discussing gastroparesis (and that’s not meant in the ‘disabled people have responsibility to educate 24/7’ kind of way…). I have had issues with unexplained nausea, vomiting, losing weight, not being able to eat even when I knew I had to and felt hungry… It has been better over the past while, but I don’t know if it will happen again, and knowing that this even exists can at least give me a starting point to mention to doctors — even if only to rule it out — if it happens again. Um, sorry for the ramble. Please feel free to delete/not post this if it’s a derail (I have a hard time knowing).

  8. Thank you for writing this. It’s an issue I had never thought to think about, having never seen anyone with a feeding tube, whatever size. But now if I see this kind if discrimination and bullying happening I know the truth and can help set the record straight.

    Ignorance is the worst when accompanied by a closed, cruel mind. Just know you do have allies :)

  9. I’m a young autistic adult with severe gastroparesis and I have a GJ tube. I’m 5’5″ and 207 lbs at last check. I was went from 250 to 227 in a month before we found out I had GP, and then, the only reason the tube placed was because I also have type I diabetes and was having critical blood sugars every day… forget the dehydration and malnutrition, obviously! I’ve been told by doctors I “must” be a binge eater my whole life, because even on 900-1000 calories (my current regimen), I do not lose weight. My protein levels crash (albumin was down to 2.0) but my lowest weight in some years has been 198. When my gastroparesis flares, I lose ten or twelve pounds, and when I am able to eat more by mouth, I gain it back (on all of 1200 calories). My family and I, not to mention some of my doctors, believes I have mitochondrial disease, which significantly impacts metabolism… but I’m in a massive upset with my city’s biggest hospital system because once a doctor decided my many unexplainable issues + social and communication differences + amazing memory clearly equated to Munchausen’s and not an autistic patient who was truly sick. So, the team that does the mito workup is part of that system and I pissed off a doctor by asking her to talk to another doctor (how HIGHLY socially stupid of me, right?)… and then that team immediately jumped on board with, “See, she’s totally mentally unstable!” It’s all One. Big. Nightmare.

    Anyway, that’s it in a nutshell. There’s obviously way more to the story, but, in short: Yes, I get it, and I do not like doctors.

    • That’s utterly horrible. I hope you get the help you need. I got lucky in that when they diagnosed adrenal insufficiency, it was so severe and so obvious that nobody could do the “she’s exaggerating or faking or crazy” thing anymore without having blood test results shoved in their face. I hope they eventually find some sort of similar results for you, whatever you have– things doctors can’t deny.

  10. Excellent article! Thanks for writing it.

    You touched on a lot of important issues here. I wanted to address the fact of how hard it is for a person to get appropriate health care. I’ve got stories and stories about this.

    For now, though, I’m afraid to go to a doctor because they all seem to think that if I just lose weight all my symptoms will go away and I’ll be just fine. Even cataracts.

    A short while ago, I needed cataract surgery. Thankfully, my eye doctor is an understanding person and never said or implied anything about my weight. But in order to undergo the surgery, I had to see a regular MD to make sure I didn’t have anything that could make it too dangerous for me.I hadn’t been to a doctor since about 1996, when I still had insurance, so I asked for a recommendation, which he gave me.

    I was diagnosed with high blood pressure, but I’m not sure I actually have it and I don’t know how to find out if I do or not. The blood pressure cuff was so tight it left bruises and hurt really horribly while it was on, which is bound to have affected the reading. So I was prescribed with a medication and went through with the surgery.

    I have no health problems that I know of, except for the possible hbp and the cataracts. I’m over 60 years old and cataracts run in my family.

    I can empathize with your inability to get anybody to take you seriously. It happens all the time.

  11. Jesusfuck this is so insane :( It amazes me how massively misinformed and biased doctors can be. Scares me, too. We’re supposed to trust these people to keep us alive and healthy. I hope as time goes on, more doctors become more educated about issues of weight and health, rather than just sticking with “You’re fat, that’s why you’re sick, stop being fat”

    My doctor actually suggested that I go on a diet last time I saw her, when she saw that I had gained back the 30 pounds I had lost a couple years ago. I quickly shut her down and asserted my desire to simply eat good food that makes me feel healthy, not limit myself to a strict diet for a while and then put any weight right back on once it’s over -.- I even have a very thin friend who was seriously anorexic in the past, and her doctor just blows it off like it’s not important to her medical history.

    Thanks for making this post. I hope it’s opened some people up to broader possibilities than they had previously considered. I know how difficult it can be to share stuff like this sometimes, and this is such an important issue. And hugs for you <3 big hugs!!

  12. When I had GI issues–I gained weight at one point…which fortunately I had a doctor who was smart enough to see that my body was in starvation mode and holding onto every ounce of baby food and gatorade I was drinking. I’m sorry this happened to you.

  13. Thank you. It takes great courage to share something so personal on the internet but it so very important for all of us reading it. I also get frustrated with health care providers who constantly bring up my weight. They never believe that I don’t over eat, that I don’t eat fast food, or that I eat healthy, homemade food or that I exercise regularly (seriously I’m in better shape than most of them!)

    Since I was in a car wreck and have a back injury, my body changed as I was not able to move in the same ways as I used to be able to. The pain also dropped my activity level drastically during the first couple years after the injury so I gained 30-40lbs during that time. My weight has stabilized around 200lbs which seems to be my new set point. I have been smaller at times but when I lose weight it is because I am sick (I lost 30lbs before my gallbladder surgery because I couldn’t eat anything without becoming violently ill) or from depression which makes me lose my appetite entirely.

    Instead of being concerned about my gall bladder or depression, the reaction was…well at least you’re losing weight. When people make that comment, every fiber of my being is screaming out “I’m losing weight because something is wrong dammit!”

    Since then I have rediscovered yoga which has done wonders for my pain and mobility but I have not lost any weight despite becoming more physically active. In fact, in the past year of doing yoga regularly 4-5 times a week I’ve actually gained 20lbs (new muscles perhaps?). Doctors continue to believe that I must be eating a pint of Ben and Jerry’s or a Big Mac every day to keep gaining weight. Even though despite the weight gain, my cholesterol levels actually dropped significantly in the past year, my blood sugar is fine, my blood pressure is fine, etc…

    My partner actually weighs about 135lbs, is pre diabetic, does not exercise, and eats fast food regularly. But since he is thin/normal, he doesn’t get the same kind of treatment even though I am ultimately more “healthy” (whatever that means)…It is incredibly frustrating.

    But I will not starve myself to maintain what is someone else’s ideal of what size my body should be. I will continue to eat foods that nourish my body in whatever quantity my body needs, and I will not be made to feel guilty for doing so. I will continue to move in a way that makes my body feel good and helps keep my pain at bay.

    I applaud you for the courage to put this out there, really. It’s necessary. It validates others who may be encountering similar obstacles and hopefully empowers them to demand change from health care providers who treat them poorly. My own father required a feeding tube after having multiple strokes that affected his swallowing ability (and yes he was fat). So. Thank you :)

  14. I know this is an old post, but I wanted to thank you for this anyways. I’ve had a few of my current docs say things and it’s something I second guessed myself on at first (600 calories max/day is fine, the doctor says so…). Which is funny because I work in home health and would never put up with that crap if a client were told that. Time for new doctors!

    I found your blog while looking up j-tubes and am so thankful for all the information you’ve given. We’ve been considering one (yayyy gp) so it’s nice to see a day to day view of things.

    Hope all is well :).

  15. Totally agree with you on the delay in medical treatment. When my issues having difficulty eating started I was 210lbs and the doctors didn’t worry too much. By the the time they took me seriously and booked tests 6 months passed I’d lost 60 pounds and turned out it was something serious and feel like hell most days. My ignorant family doctor still tries to tell me “you look great though”

    • Holy crap yeah losing 60 pounds that fast is never good. I lost about 75 total from the combination of gastroparesis and adrenal insufficiency. But then when I went on steroids I gained most of it back. Then lost 10 pounds, purely in fluids, overnight, when treated for lymphedema. Now on the steroids, I have almost a completely stable weight regardless of how much or how little food I get — I don’t gain weight and I don’t lose it even at extremes (like getting between 300-700 calories a day pretty consistently for at minimum most of a month, when I started forgetting to plug my feeding tube in — I didn’t lose much weight, although my fingernails and hair started breaking into pieces and I developed other signs of malnutrition). Weight change can be a sign of food issues but it’s not the only sign, it’s not always a sign in the obvious way (sometimes malnutrition can even lead to weight gain, including in gastroparesis), and it’s not always a sign of anything at all (sometimes you’re thin when you’re getting too much food, sometimes you’re fat when you’re getting too little). I find it really disturbing the way people’s weight is used against us in medical situations.

  16. Just stumbled upon your post. I have a GJ tube myself for Pancreatitis and I get so irritated when people say to me “you don’t look like you’re not eating” or something equally as rude- as in I don’t look stick thin and deathly ill even though I feel it and was VERY ill last year. (Mind you I wear a size 2-4!!!) I don’t get people making comments about weight at all let alone to people with a feeding tube. Hope you are on a healthy rode now.

  17. I know it’s old, but thank you so much for this candid post. I’m currently in the hospital for the second time this month, unable to eat or drink due to a combination of swallowing problems and gastroparesis. I’m currently at 298 pounds, down from 320-something just two months ago. Unfortunately, I’m experiencing the “but you can’t be unable to eat; you’re still fat” disbelief and medical neglect. Today is my 7th consecutive day inpatient and the GI team refuses to see me since “there’s nothing they can do” and the only professional attention I get is a once/daily visit from a resident. The “plan” for my care is to wait until my stomach decides to start working again. Seriously. 🙄

    Thanks again for this post. My heart needed it today.

  18. I am not fat by anymeans or even overweight but i am at the high end of normal for my height. I gained 20lbs last year unprovoked because a combination of Gastoparesis and dipping down into hypothyroidism. So even though I was eating very little or nothing due to my GP I wasn’t losing weight luckily my GI doctor and doctors don’t focus on my weight and more on my symptoms. At the beginning of this year I was admitted to the hospital for dehyrdration, the begins of malnutrition (low in protein, potassium, sodium, glucose(it was at 56), and calcium, pain management, and nausea/vomiting all due to my GP coming back in full forc after a botox procedure was wearing off. Despite my weight not being changed they decided to put down an NJ tube, and now ater nearly 8 weeks I still have it. I have two surgrical options either a pylorplasty or a GJ tube. However due to my EDS and Central Adrenal Insuffiencey I am an extremely high risk surgical candidate for th pylorplasty, which would ideally be the best long term because it would fix the problem. The surgeons at my current hospital are fesuing to do surgery because they are very concerend with how high risk I am for complications and my lack of ability to healing especially since I have had issues in the past and because it is a major abdoiinal surgery. So we are in the process of looking for surgeons to consult with and for other GI doctors because my current GI doctor doesn’t know where to go right now or what to do long term for me. He also thinks I need an ileostomy for my lower GI issus.

  19. I love your post! I am “obese” I also have a feeding tube due to GP aND throat issues. I’ve had it about 7 months and (unfortunately) I’ve put on about 15/20# I’m finally on a formula Vivonex RTF, i’m tolerating well. I’m on adult tubies on fb, hope to see you there!

  20. Thank you so much for sharing your story! I have Liver Cirrhosis stage 3-4, I’m also diabetic type 2, and a whole other myriad of health issues, I lose a little weight here and there, my gastroparesis has gone from trying to handle it by different foods, etc. It’s so bad right now I can’t eat without wanting to curl up and fight the nausea. I’m lucky to have a good GP, who has referred me to a different Gastroenterologist, the one I had, told me if I didn’t get off some of my medication (I also have severe osteoporosis) that he would never give me a liver transplant, and he demanded that I loose 100# or more. Sure doc, I’ll get right on that.
    I’m seeing this new doctor tomorrow and I’m going to flat out beg, to have a tube. I can eat, I can’t move my bowels myself, I go once a week maybe. Sorry for the TMI, I think of food, I want to throw up. I can’t even enjoy life because I’m so miserable.
    I got out of a domestic violence\sexual assault marriage, and I volunteer to keep busy.
    I appreciate your story again! This gives me hope!

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