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!
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.
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.
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.
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.
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.
This syndrome can occur at the beginning of treatment for anorexia nervosa when patients have an increase in calorie intake and can be lethal. 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.