Cachexia

I’ve been tweaking this for days, unsure of whether or not I should actually publish it, but I feel that it’s an important part of my story.  It’s a little personal, and a little uncomfortable, yet I think it needs to be seen.  I know I’m not the only woman this has happened to – having our symptoms discounted or dismissed, saying we just need to manage our stress better, or perhaps we need to take anxiety pills because all women are either neurotic, or fucking psychotic.  Be subservient, you’re a woman!  Obey, damn it!

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I took some pictures of myself not long after my Crohn’s diagnosis.  Perhaps I should have gone to a doctor sooner?  Not that it would have done any good, since I assume just as much time would have been spent telling me I’m depressed, but otherwise completely healthy.  I scared the shit out of myself, what I looked like as a skeleton.  I was an empty husk.  I had speech difficulties because my brain wasn’t getting enough fat and cholesterol to function properly.  My appetite was completely shot from pain and tossing up my food every time I ate.  I ate as much and as often as I could, but it wasn’t nearly enough.  Whatever did manage to pass into my duodenum, rapidly blasted through my intestines.  Healthy digestion should take a little longer than 3 hours, I’d assume.  The starvation did put my Crohn’s on a very short hiatus, but there was the small matter of every system in my body beginning to atrophy, including my brain and heart.

Let’s travel back in time a bit.

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130# Kara, 2009

Over the course of my mystery illness, I went from 135 pounds of solid muscle and ample boob’age, to 100 pounds, give or take a few depending on the week.  My women’s health CNP is the only one who was concerned about my weight (besides me).  In fact, when I saw my GI doctor for the first time, he asked how much weight I’d lost because I “look good” as is.  I told him my normal weight is usually around 130, then he asked if I’m sure I wasn’t overweight before.  Uh, yeah dude, pretty sure (I thought I looked good at 130?).  I had shortness of breath from anemia, muscle spasms and cramps that woke me up at night and brought me to tears, and started to experience what was likely the beginning of my neuropathy/gastroparesis, not to mention the ever-fucking-present diarrhea.  I was given a handout on FODMAPs, then sent away.

It was months between tests, most of which were done due to my pcm’s insistence.  First an upper endoscopy with gnarly red gastritis and a polyp that was removed, then a colonoscopy that was considered “normal”, even though the area surrounding my AO, and to about 5 centimeters up was red, ulcerated, and bleeding.  “It must be the prep.”  It wasn’t until I hit 89# that any of the doctors started freaking out and got serious about helping me instead of treating me like a hysterical female.  I finally had a capsule endoscopy that showed what was going on in the areas that traditional endoscopes couldn’t reach.  Two hours into the recorded images, my small intestine lit up with ulcers. Big ones, deep ones, ones as big as Audrey 2.  He called me on a weekend to let me know that I surprised him – he was about 90% sure what I had was Crohn’s ileitis.  I had an IBD serology performed, which reinforced this diagnosis.  Plus, having a sibling with IBD strengthened my case.  Would this have happened to a man?  I honestly don’t know.  I somehow doubt it.

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99# Kara aka ‘you look good’/dweeby, but feel like dookie, 2012

I’m often inclined to trash my anorexic near-death pictures, but I thought long and hard and decided I need to save them as a reminder of what happens when I don’t put the work into being a pain in my doctors’ asses and making sure I keep myself well-fed (which means eating every 2 hours all day long).  It’s really fucking appealing to not eat when there’s a reversal in symptom severity, but I can live much longer as a miserable farty person, than I can with only 9% body fat, which is just as miserable in other ways.  Life is misery, so it’s a good thing it’ll eventually end.

Rather than publishing the 87#/year 2013 photo collage directly on this post, I’m going to link to it.  All of my private bits are covered, but otherwise I’m pretty exposed.  They’re gross and skeletal, so it could be a trigger for those who are recovering from or have an eating disorder.  Curious what I might have looked like?  Here.  84# looks even worse, so I’m not even going there.

The worst part about it was all of the positive feedback I was getting as I was unintentionally losing weight, before it got extreme.  Like, “What’s your secret?  I need to drop 20 pounds!”  My secret is inflammatory bowel disease – the best weight loss plan, evah!  Or when I talked about wanting to gain weight, “why would you want to do that?!”  I hate our society.  Really.  Nature designed us to be curvy, not skinny.

Then, there was the fact that I lost more weight after starting my medication that made him rethink his diagnosis, so I was basically left hanging while I was preparing to move.  I visited him two weeks before I started lugging all of our shit to Maryland, hoping for a little help, like….enough drugs to get me through the move until I could find a new doctor, but he told me he didn’t think I had Crohn’s.  I was dropped and left to fend for myself, because IBS never hurt anyone.

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My first hospitalization was done under the pretense that I had IBS, and the stress made me really, really sick.  Like it was some sort of psychosomatic thing.  It wasn’t until the second admission in the same month and another colonoscopy that they said “Oh, hey…. you’ve got Crohn’s.”  No way!  Crohn’s disease.  For real this time?  It had gotten bad in a hurry, and it still isn’t under control.  There’s something to be said for catching and treating it EARLY, with the possibility that it won’t progress as quickly, or will be easier to push into remission at the very least.

The weight gain process was long and complete hell (3 years later, and I still can’t get it to stick).  I was on non-systemic steroids (budesonide) and a maintenance medication (mesalamine) that didn’t seem to do a whole lot.  I found that my mind reacted just as badly to food as my body did.  I’d get extremely anxious, borderline panicked, after eating.  I didn’t have anorexia nervosa, but something had changed.  Being in a state of starvation for that long, I wasn’t set up to process nutrition and calories efficiently any more.  The anxiety was my body’s way of telling me to back the fuck off.

Any individual who has had negligible nutrient intake for consecutive days and/or is metabolically stressed from a critical illness or major surgery is at risk of refeeding syndrome. Refeeding syndrome usually occurs within 4 days of starting to re-feed. Patients can develop fluid and electrolyte disorders, especially hypophosphatemia, along with neurologic, pulmonary, cardiac, neuromuscular, and hematologic complications.

During fasting the body switches its main fuel source from carbohydrates to fatty acids or amino acids as the main energy source. The spleen decreases its rate of red blood cell breakdown thus conserving red blood cells. Many intracellular minerals become severely depleted during this period, although serum levels remain normal. Importantly, insulin secretion is suppressed in this fasted state and glucagon secretion is increased.[1]

During refeeding, insulin secretion resumes in response to increased blood sugar; resulting in increased glycogen, fat and protein synthesis. This process requires phosphates, magnesium and potassium which are already depleted and the stores rapidly become used up. Formation of phosphorylated carbohydrate compounds in the liver and skeletal muscle depletes intracellular ATP and 2,3-diphosphoglycerate in red blood cells, leading to cellular dysfunction and inadequate oxygen delivery to the body’s organs. Refeeding increases the basal metabolic rate. Intracellular movement of electrolytes occurs along with a fall in the serum electrolytes, including calcium and magnesium. Levels of serum glucose may rise and the B1 vitamin thiamine may fall. Cardiac arrhythmias are the most common cause of death from refeeding syndrome, with other significant risks including confusion, coma and convulsions and cardiac failure.[citation needed]

This syndrome can occur at the beginning of treatment for anorexia nervosa when patients have an increase in calorie intake and can be lethal.[5] It can also occur after the onset of a severe illness or major surgery. The shifting of electrolytes and fluid balance increases cardiac workload and heart rate. This can lead to acute heart failure. Oxygen consumption is also decreased which strains the respiratory system and can make weaning from ventilation more difficult.

Read about the Minnesota Starvation Experiment if you want to see how evil the US government is.  I’d love to get my hands on the full text.  It’s some completely insane shit.  One of the study participants actually sawed off fingers so he could get out of the testing, though they can’t prove that it was intentional.  I’m sure it was.

It appears I had plenty of reason to feel anxious during this process.  It SHOULD have been done in a hospital, but we were unable to get insurance authorization.  It’s a good damn thing I was so fit before getting sick, otherwise I doubt I would have survived refeeding.

I started gaining weight in earnest (mostly water) in January and February of 2014, then by May I had been officially diagnosed with chronic kidney disease, stage 3B.  I don’t know if I’m making connections where there are none, but this is the only thing that makes sense to me – that the increased fluid load and ‘lyte abnormalities put entirely too much stress on my kidneys and damaged them, revealing the underlying nephropathy.  Awesome.  Bronze lining: I guess we would have figured it out at some point anyhow.

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20 thoughts on “Cachexia

  1. The internet doctor is in the house…

    Seems like most of your symptoms could be explained by your kidney disease, which you were probably suffering from long before it was diagnosed. But, you’re awfully young to be suffering from kidney disease. What do they think caused it?

    And yet, I feel like I’m missing something… something complex, like sickle cell or lupus…

    http://www.nature.com/news/cachexia-the-last-illness-1.18961

    “driven by inflammation and metabolic imbalances”

    Well, you’re definitely imbalanced. But you don’t look to be inflamed. Of course, inflammation plays a good game of hide-and-seek. 🙂

    Like

  2. Women say somethings not right and get ignored … all the time … which pisses me off no end! I suggest we line em up and castrate the bastards … oh better yet, starve the bastards and then tell them they’re being hysterical and give them a large OD of an anti-psychotic! … and as for the compliments about losing weight! What is wrong with them! My doc didn’t take any notice when i said i was losing weight and had gone from 75kgs to 56 kgs … nope nothing wrong there. Idiots. ….. All in all though girlfriend … you are one brave kick ass woman! ! Today your my idol! xo

    Liked by 1 person

    • I feel like I need to critically examine my personality or something….to find the flaw that says “HEY, TREAT ME LIKE SHIT PLEASE!”

      It’s probably the whole super low-key thing I’ve got going. It’s easy to confuse with depression. Weirdly enough, when they think I have a “brighter affect”, I’m actually flipping the fuck out. It’s all relative, I guess.

      Thanks love! That’s a huge compliment coming from you. 🙂

      Liked by 1 person

      • 🙂 funny to though .. . starving and all kind of exudes an air of depression duh … and thats why they shouldn’t dismiss so quickly just because we have a vagina! 😉

        Liked by 1 person

  3. I am absolutely flabbergasted by how the medical community treats woman patients compared to men. A man rapidly losing weight and seeking medical care would be immediately taken seriously and no one would be asking him what his ‘secret’ was. As a gender we seem to be blamed for our physical symptoms due to a choice or due to mental illness and that’s the end of it. We don’t feel trusted so in the end we don’t trust doctors, medical staff, hospitals or really any health professionals and we put off medical care whenever possible to avoid them. Like say, not going to the hospital when we probably should…. What a bunch of ass hat doctors though, if they would have taken their heads out of their asses for a little bit they may have noticed kidney function issues and diagnosis and treatment could have started that much earlier!

    Liked by 1 person

    • This may sound odd, but I honestly hoped that my experiences with this was rare, but that doesn’t seem to be the case. It’s extremely disheartening to see/read about all sorts of women having similar issues. I suppose all we can do is share what’s happening to us, and hope it gets acknowledged by medical professionals at some point.

      Liked by 1 person

  4. I’m glad you tell your tale. My symptoms/illnesses are nothing like yours (I tend to fall down stairs and get brain tumors =P) but we need to come together and fight against the shitty doctors that blow us off. Because baby girl, you were scary thin, and that’s not okay! I did a post a while back about my weight and included a pic of me at 95ish pounds. So I get it. And I have fought like hell to get anxiety and anorexia off my chart.
    I know where you’re at, because I’m sort of there too. How much can we take? If being in pain and being sick is the only way for me to live, do I want that life?
    But I can tell you, when I saw the pictures of you oh-so-way-too thin, I saw my sister in law that I just lost in January, and God I miss her. I guess I’m just in the camp that wants to see you keep fighting. And I know it’s hard.

    Liked by 2 people

    • 😍💕

      Hey, I don’t fall down stairs, but I’m quite the tumble-monster myself! 😉

      Probably the only sane thing my mother in-law has said, is when I (or another patient) gives up, that’s when we’re no longer able to advocate for ourselves. That’s when we need someone to step in to help carry the burden.

      I hate it – having to ask my husband to help when he already does so much, but I know he’d rather I be alive and deal with the inconvenience than have to live in an empty house without me. I’m driving him nuts with my foot dragging. I need to quit being a stubborn, selfish jerk and let him help me. Easier said than done!

      Like

      • Lol…I know, you and I compete for falling down. But mine invariably involves stairs. Stupid stairs. =P I upgraded the padding in my carpet when we built the house. lol!

        She’s right. And I know. That’s why we gotta support each other, along with having our support people. ;*

        Liked by 1 person

  5. You’ve made two important points for me. 1) The perception of the ‘healthy’ female body. 2) Food nourishment and how it affects how you feel. People don’t think of the latter enough. Eating makes me feel uncomfortable (IBS and other things) but not eating is making me ill. But the discomfort is so powerful and the fear of gut ache so strong that it too frequently wins. Now I think of food as fuel and eat as little with as much in it as possible, washed down with Gaviscon. Eugh. Oh, didn’t know about Minnesota Starvation Experiment.

    Liked by 2 people

    • I supposedly have IBS in addition to IBD, and food aversion is most certainly a huge problem. I know the struggle well. Having been through the process of trying to come back from the brink of starvation, I’d rather deal with the pain, bloating, and other shit (literal and figurative). Sometimes, though, I do take a break. Sometimes I NEED a break…gives the angry guts a chance to rest. But I have to remember what happens if I stay in that cycle too long.

      The other thing about all of this is that eating is no longer fun. It’s too clinical, like taking medicine. It takes most of the enjoyment out of the experience. People look forward to going out to eat, and I’m never very excited about the idea. Pleasing the palate is one of the basic rights of being a human that people with digestive issues are denied. It sucks!

      Liked by 1 person

  6. Pingback: Gravity | Polishing Dookie

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