Sunday, June 15, 2014

the chubby tubie and other medical marvels

this entry, like so many others, started out as a comment to a dear friend. she, like me, is a bit on the fluffy side and as such, she has faced much of the same nonsense i have in regards to being ill and needing a feeding tube. there's an unfortunate and inaccurate belief among many people, including medical professionals, that if someone is overweight it is the source of any malady they experience. there is also a belief that those of us who are fluffy, chubby, pudgy, or squishy cannot possibly be in much danger of dying from starvation because hey, we have a few extra layers, right?

well, not so much, actually. in fact, not at all.

that's why i'm here to tell you that if you hold those beliefs you are sorely mistaken. and i want to help you, dear reader, to understand why what you know about weight is wrong, as well as to understand a bit more about how this disease that i and so many of my friends suffer from, works.

NECESSARY DISCLAIMER: im gonna preface this entry by saying anyone who has anything to say about my weight or anyone else's weight, whether they are heavy, thin, or "just right", will get a smackdown. so if you don't think you can read about a chubby girl or a skinny girl or see pics of them without making a nasty comment, dont read any further. someone else's body is really none of your business in the first place anyway. i'm writing this blog to educate, not to encourage stereotyping, shaming, and cruelty. nasty or ignorant comments will be removed and their writers will be permanently banned and possibly have their computer exploded from the inside out by my brother, the hacker slash codemonkey extraordinaire.

i also want to apologize (but only a little, since i wouldn't have written this if i didn't think it was important!) for the length of this, but i feel this is a very important topic that doesn't get discussed nearly often enough, and i feel that people who are heavy are often dismissed by doctors as well as others in the community, their friends, their family, and even perfect strangers. so i have a lot to say, and i want you all to take every word of it to heart---i think that everyone should know this stuff when it comes to the very touchy and often upsetting subject of being chronically ill and overweight at the same time, because even doctors assume that if you're heavy, that's why you're sick.
my beautiful & bubbly bestie
okay. onwards, dear reader.

first things first: weight is irrelevant.

no, seriously. hear me out. im old and i know things and this is an important thing that i want all of you to know as well. weight. is. irrelevant.

weight means nothing. nothing at all. there are people who are underweight and have been for their entire lives but were always healthy. my bestie pixi is one such person--even though she's chronically ill now, with a condition called UPJ (Uretero Pelvic Junction Obstruction) she has always been very thin and was in pretty decent health for most of her life.

there are also lots of people who are overweight or, yes, even morbidly obese who are healthy! no diabetes type II, no heart problems. athletic, active, healthy-eating people who just happen to be heavier than a chart hanging in a doctor's office somewhere says they should be. you can be healthy or you can be ill at any weight.

in fact, many times weight has nothing whatsoever to do with your health! in many, many cases, whether someone is overweight or underweight, weight can actually be a symptom of a problem rather than the cause of the problem.

im gonna give you a partial hit of my story here, and stick with me cause i promise its very relevant.

shortly before i was diagnosed with gastroparesis, i was the thinnest i'd ever been in my life. at 5'1 i was 148lbs. which is still overweight, but for me, for my body type, for my build and the way i carried the weight, i was wearing a
Helicobacter pylori, previously named Campylobacter pylori,
is a Gram-negative, microaerophilic bacterium found in the stomach.
Read more about h. pylori at
size 14/16 in little girls clothing, comfortably. that was after a lifetime of being very overweight. i
me at 148lbs in a child's tshirt.
started getting sick, and was first diagnosed with a raging helicobacter pylori infection that they said had probably been attacking my gut for years at that point.

they treated it, but i didnt get better. then they took my gall bladder out. and it still didnt get better. finally they diagnosed me with gastroparesis after an endoscopy revealed food that had just been chilling out in my stomach for over 72 hours already. for nearly ten years it was bearable. i threw up a few times a week maybe, or if i ate something really bad (deep-fried food, marinara sauce, etc). but i was functional and i just had to take some pills now and then, with an ER trip thrown in every so often for a "hard reset" when i got stuck in a vomiting cycle.

but things changed drastically in december 2011. my girlfriend and i ordered chinese food. all i had was white rice (i was never much of an adventurous eater), but we both got really terrible food poisoning and spent the following week in that special hell known only to those who have gotten really terrible food poisoning. at the end of the week, my love got better. but i never did. that bout of food poisoning set loose something in my body that i am still battling to this day. melodramatic phrasing aside, it truly changed my life forever, in ways i could have never imagined beforehand.

me at 148lbs again.
at that point i weighed probably somewhere around 250 or so. a lot for somebody my height and build. the jump from 148 to 250 came mostly from risperdal, but also some other psych meds plus spending a LOT of time locked up in a psych ward for weeks at a time (with no physical activity at all beyond walking from my bed to the cafeteria to group and back again) contributed as well. so, whatever. that made me morbidly obese and i was unable to lose that weight again.

much to my chagrin, even though i was throwing up every single day sometimes more than 20 times in a 24 hours period, i was *gaining* weight.
me at max weight, with a swollen "GP"
belly after eating a few bites of egg.

because of this i had a lot of doctors tell me, "well, you must be keeping something down. you're gaining weight, and your cholesterol, which was previously fine, is now off the charts." honestly for a bit i thought i was going crazy. but i finally got sent to a GI who was more concerned with my health than my weight, and my first NJ tube was placed, and suddenly i was able to function again. i wasn't even on formula at the time--just getting my meds through the tube improved my quality of life vastly.

up until a little less than a year ago (about winter 2013 or so, through summer 2013) i more or less maintained my weight. and even my labs, though they were borderline, were still just barely within normal range. for all intents and purposes, my body was telling my doctors that i was fine. but of course, i wasn't really. in march 2013, after almost a year of having NJ tubes in (for a total of 5 different ones over the course of 11 months), my GI placed the GJ tube, and we finally got approval for the proper formula and i was actually running feeds daily and it was all good.
more calories = losing weight?!

i was getting more nutrition than id ever had in my life (since i was a baby ive been a very picky eater and only eaten mostly carbs, even well before i was sick) but i was losing weight. how could such a thing even be possible?! because for the first time i was getting regular nutrition-not just calories, but all the vitamins and nutrients and micro-nutrients--my metabolism was like "whoah. dude. so sorry, i didnt realize i was supposed to be doing stuff. ill get right back on that." and it kicked in and started burning away the weight. my cholesterol labs went back into normal/low range as well.

it's actually pretty simple. when the body goes into starvation mode, it holds on to absolutely everything you put in it. a healthy body gets food regularly, separates the crap from the good stuff, absorbs the good, and throws the crap out (literally turning crap into actual crap.) but when you're not giving your body nutrition on the regular, your body goes into survival mode and is basically yelling at all of your organs, "guys! guys dont get rid of that! i dont care where you store it--stick it in an elbow or something, but we need to hang onto that. i need that, so dont get rid of it." and so your body, knowing that it's not getting fed regularly, becomes an extreme hoarder and it doesnt get rid of anything.

and of course, you're also dehydrated. so the body starts holding onto that as well. and when it gets to the point where you're not taking in much of anything, your body once again panics, and it starts digging into all that crap it stored up, the emergency winter supply of fat (fun fact: a person cannot BE fat. fat is a layer of a greasy-ish substance that forms under the skin, also known as 'adipose tissue'. the idea of a person literally being fat is slang and also inaccurate and mean.)
medicine, yay!

so, when the body panics and starts eating all the fat it stored away, it produces cholesterol as a by-product of that self-cannibalization. many people who are starving will see a sometimes serious jump in their cholesterol, and if, like me, their primary dr at the time is a doofus, he will tell them to stop eating fried foods, which is probably the least helpful advice for that situation ever.

so because i ramble lets recap. in the third person because it's fun to talk like that.
  • lissy is throwing up a lot and cannot hold food down.
  • lissy's metabolism panics and orders lissy's body to start holding onto every single cracker, popsicle, and grain of salt lissy does manage to keep down.
  • this goes on for awhile until lissy's metabolism realizes "well, we can't stay alive on crackers." and orders the other organs to start cannibalizing as much of themselves and each other as possible.
  • lissy's cholesterol goes up and lissy is still overweight, so nobody takes lissy seriously.
  • lissy gets sicker and sicker until she can no longer function, and ends up in the hospital.
  • lissy finally finds a doctor that understands this process, and they put a feeding tube in.
  • lissy starts getting nutrition, and GAINS MORE WEIGHT. this is because her metabolism is still on alert level red. it hasn't realized that the nutrition will keep coming, so it's still holding onto absolutely everything.
  • after a bit, though, lissy's metabolism realizes, "oh. this isn't temporary, guys. it looks like things are okay." and drops the alert level down from red "severe" back into blue "guarded".
  • with the alert level back down, lissy's organs stop cannibalizing themselves and every spare bit of fat they can find, and rapidly lissy starts losing weight, because her body has realized that it doesn't need to be a hoarder anymore and called the sanitation commission to clean things out with a bit of help from miralax and fleet.
  • lissy's weight loss slows and her cholesterol is back to normal. she's still chubby because she's a chubby person and always has been, but her body is functioning the way it's supposed to (more or less), and it has begun to lose weight at a rate of a few lbs here and there--a nice, healthy, SLOW, weight loss.

[PSA: fast weight loss is a very, very bad thing. no matter how healthy you think you're being when you lose weight, if you're losing weight fast, it can be extremely dangerous. healthy weight loss is no more than 1-2 pounds per week. speaking strictly calorically, a reduction of 500-1000 calories per day causes weight loss of
1-2lbs a week. anything more than that can be very dangerous and in some cases, life threatening.]

now, last year, when my nutrition crashed again due to the eosinophilic disorder and the incredibly harsh formula i was on that i could not tolerate, i was taking in basically nothing--not even the eat-and-puke cycle we're all so familiar with, i just flat out was taking nothing in because my body just became too weak to be vomiting 20+ times a day again. during that time (a period of about 3 months or so), i lost 70 lbs. which is very, very unhealthy and dangerous.

i suspect that because i was getting less than 500 calories a day, my body pushed right past the "hold onto everything" panic and just kind of gave up. at that point i was told that if we didn't get a grip on it very quickly, i didnt have a choice and was going to have to go on TPN (that's IV nutrition, generally given through a central line, for those playing the at-home version of this game.) thankfully my GI discovered through scope biopsies that i had eosinophilic gastroenteritis. (for those who dont know, i sugest checking out APFED to learn more about eosinophilic disease. but to give an idea, ive always referred to it as "the allergic-to-everything disease" because thats basically what it is--EoS provokes an immune respose from the body to anything and/or everything and while it really does vary what "safe foods" there are for
tubes are beautiful because being alive is beautiful.
each person with a form of eos, in general people with an eosinophilic disease's list of unsafe foods is much, much longer than their list of safe foods. there are people with eos who literally cannot eat any food at all and many who can only eat one or two types of food.)

i was given steroids and placed on a hypoallergenic elemental formula, and again, the weight loss plateaud.

currently i am still on the stereoid. i still have a GJ tube and am still on the elemental formula, but i am once again not doing so well with it. so even though i am STILL overweight--despite going from a maximum weight of 275lbs down to my current weight which i will not share--i am still pretty sick, and our priority right now is to get me to a place where i can run feeds regularly again.

but throughout all of this, my labs have never shown that i was starving (because i wasnt--i had lots of fat for my body to cannibalize, which kept my labs in the normal range, something that would not likely happen for someone who was thin to start with). i have never been even a "normal" weight for my height, never mind underweight. i have had a lot of people not take me seriously because hell, how sick could i be if i was so big?

and for the grand finale, even all of that set aside--one of the biggest issues with gastroparesis is vomiting. some people dont vomit, but most GPers do. and every single time a person vomits, they are doing damage to their stomach, esophagus, throat, teeth, and even their muscles, spinal cord, and believe it or not, eyes. vomiting is a very violent thing, and the body is only meant to do it in order to get rid of something that is toxic, such as spoiled food or poison. prolonged vomiting can and does cause all kinds of really serious and life-threatening issues.

- a mallory-weiss tear can cause internal bleeding so severe that a person could bleed to death interally before they even realized anything was wrong.
thumbs up for tube feeding!

- forceful vomiting can cause blood vessels in the eyes to burst and damage your eyesight (my eye dr regularly checks my eyes with every tool at his disposal because he is concerned about exactly that--something i didn't evne know was possible until he told me it was.)

- the acid your body produces that comes up every time you vomit does more damage than lindsey lohan on a bender. it strips the teeth of enamel and can cause tears and ulcers throughout the entire digestive tract.

- chronic dehydration can lead to all kinds of problems runing the gamut from UTIs to heart attacks to total renal failure. it also means there's not a lot of moisture in your intestinal tract and can cause obstructions, anal fissures, bowel tearing, external and internal hemheroids, bowel impaction, polyps, and the combination of all these side effects can lead to SIBO and other problems that can eventually lead to inability to voluntarily move one's bowels, necessitating ongoing laxative use and in some cases surgical repairs or the addition of an ostomy to allow the expulsion of waste.

- constant vomiting can also cause cancer in all the places it goes through: stomach, esophagus, throat, mouth--even the sinuses and ears by way of the throat. other complications can cause cancer and other serious issues in the other direction as well.

- sleep vomiting (something that i and many others have experienced) can lead to death by aspiration. (choking to death in one's sleep.)

- repeated vomiting strains the body and can cause spinal injury (i can't count the amount of times that i've thrown my back out just from vomiting), muscle strains and tears, bursted blood vessels, electrolyte imbalance, severe migraines, nerve damage, elevated blood pressure, tachycardia, heart attack, fainting, anyeurism, stroke, seizures, and death.

the bottom line is that a person with gastroparesis (or similar conditions) has all of the same risks and complications as someone with anorexia nervosa and bulimia combined, with a bunch of extra risks and complications thrown in just for fun.

people do not die from gastroparesis. gastroparesis is not a terminal illness.

but they do die from complications due to gastroparesis. and most of those complications are related to long-term damage from prolonged and violent vomiting, ongoing starvation, and simply having old food lingering in the digestive system for several days or longer.

gastroparesis is not about weight. 

its about the hell your body goes through as it tries to keep you alive.

i fight like a girl and i always will.

No comments:

Post a Comment

comments here are moderated--trolling, nasty, inappropriate and spam posts won't ever see the light of day. civil debate is encouraged! :)

before you comment, THINK!
T - Is it true?
H - Is it helpful?
I - Is it inspiring?
N - Is it necessary?
K - Is it kind?