Before I begin- Again, please no medical advice or suggestions. I am going to the Mayo Clinic in March and I will get their advice and I am just going to ignore any medical advice posted, sorry. Please no pity party either, I’m just angry and need a a place to rant and vent, that’s it. Feel free to ignore this post and move on.
So… starting in about January of 2023, I started dry heaving almost every morning and this has happened ever since. Nothing has ever come up. Within five minutes of getting up in the morning, I dry heave. Sometimes once, but sometimes a few times.
In March, I stopped eating for six weeks. It’s not like I’m too nauseated to eat or I feel too full to eat, I just do not want to eat. Period. I’ve explained it to others like this- would you be able to eat a turd? No. That’s how all solid food feels like to me. I can’t even force myself. It’s a total aversion to food. Even the smells of food can trigger it, especially savory smells like onions, cooked meat or cheese (meaning I hide in my office in the garage when my wife and daughter have pizza). My current doctor has described it as anorexia but with a physical cause.
I went to urgent care, they told me to go to the ER because they couldn’t give me the diagnostics I would need. I went to the ER. They gave me X-rays, they took labs, and they did a couple of other tests I can’t remember now and sent it all to my doctor (who I’ve since gotten rid of because she was worthless). She told me there were no results, but to be sure I also needed a CT scan, and my insurance wouldn’t let me go to a private facility, so my only option to get it quickly was to go back to the ER the next day and get one. Incidentally, the first day was an 8-hour visit and the second day was a 6-hour visit. Hooray American healthcare system.
I got prescribed various anti-nausea medications, which were of no help because I had no nausea. I ended up living on Ensure and Gatorade.
Anyway, by mid-April, I was eating again. It just suddenly happened. I felt like eating, ate some crackers, and I was fine with an appetite again. I still heaved every day, but I was fine.
I also had to do a colonoscopy the next month, and just to be sure, I scheduled an EGD where they check your stomach as well. They found an ulcer. Finally, an answer! Nope. They did another EGD six weeks later, the ulcer was gone and I was still heaving.
No one knew what was wrong, of course, but it seemed less urgent. I scheduled a bunch of tests and, since this is the U.S., they were scheduled for months later and the summer started.
Then, in August, on the morning of August 20th, it all changed. I got up, ate some cereal, and that was the last thing I ever ate so far.
Back to the doctors it was! This time, I got a head MRI in case it was neurological, as I do have a rare nerve disorder as well (trigeminal neuralgia) because I won the fucking genetic lottery. Nope, MRI showed nothing. My neurologist actually said my brain was the most healthy she’d seen in a while. So that didn’t work.
I couldn’t keep taking time off of work, so I took FMLA, a law that allows you to take up to 12 weeks off, unpaid, for health reasons and have a guaranteed job you could come back to. It is actually paid for bigger companies, but if a company has under 50 employees, which mine did, no pay.
12 weeks went by and I just had to end up quitting. What else could I do? I was glad because I hated that job and I was able to put my very bullied daughter into online school and supervise her, so there were good sides, but we’re down to a single income now with ever-mounting medical debt despite having “good” insurance.
Anyway, back to the medical situation! I had a HIDA scan. That tests for gallbladder issues. The HIDA scan suggested that might be a problem. So, again, hey, a solution! I had my gallbladder out just before Christmas. It’s a simple surgery and you can recover from it with almost no trouble because the gallbladder can be removed like the appendix. I was hoping I’d wake up hungry. No such luck and my gallbladder was healthy.
At this point, most of the doctors basically threw up their hands and said they didn’t know what to do and I applied to go to the Mayo Clinic. For those of you unfamiliar, it’s one of the best hospitals in the country and it specializes in cases no one can figure out. Sort of a real-life House situation except with lots of doctors instead of one asshole. They accepted me and I go on March 22nd. I was going to have to do a GoFundMe for the trip, but my 81-year-old mother, who is relatively well-off, said she would go with me to be an advocate and take notes and also pay for an AirBnB. I don’t really want to drive 8 hours up to Minnesota with a semi-crazy old lady, but at least I’m saving money.
Obviously, it’s been very hard on my family. On top of general worrying about me, I can’t go out to eat with my wife and daughter because I’m concerned I won’t be able to handle a restaurant’s smell. I can’t even get them fast food. My daughter wanted a meatball sub and I had to tell her I couldn’t get it for her because I couldn’t handle going inside and I couldn’t handle the smell as she drove it home (my wife got it for her later, but I hate telling her I can’t get her food). On top of that, I have to request they turn the kitchen fan on when they eat or I won’t be able to come back into the house. I usually go to my mother-in-laws’ house on Christmas, but I couldn’t because there would be a whole bunch of food there.
I wish I could eat. So badly. For so many reasons. I keep seeing food ads and think of how good it would be to have them (in an abstract sense, I wouldn’t be able to eat them if they were in front of me). A Nepali restaurant opened in town. I have never had Nepali food, but I love Indian food and I love Tibetan food and Nepal is between them. I drive by it all the time wishing I could have just a tiny bit.
The weirdest part? I feel fine almost all the time. I have very little energy obviously (I do try to exercise), and there’s the heaving part, but I don’t really feel sick most of the time. Also, I can brag that for the first time in my life I’m just 5 pounds above my BMI ideal weight of 180 pounds. Before I got sick, I weighed 260 pounds. Also, I don’t have high cholesterol or high blood pressure anymore, so I guess there’s a silver lining? Buying a whole bunch of new pants because none of the old ones fit anymore kind of sucked though.
Anyway, that’s my story. It’s six months since I’ve eaten today. My “diet” consists of- Tea in the morning, Ensure four times a day for the nutrition, Gatorade twice a day for the electrolytes, V8 twice a day for the fiber (I have to drink it while holding my nose), and as a treat, either root beer at home or a chai latte out somewhere. Also, I might have gotten the order of things wrong, sorry. There’s been so much that I’ve had to go through.
Six months. I’m going to celebrate by not eating some cake.
Edit: Hooray having a terrible memory too, my mother reminded me this morning that I go on March 26th.
This isn’t advice or suggestions, but rather questions about your condition I’m curious about from your description. If this isn’t something you want to discuss, I totally understand. Simply ignore this post. I certainly don’t take any offense, and I hope you feel better.
You made mention in several situations about food smells triggering your symptoms. Is it just food smells or do any other strong non-food smells trigger your symptoms? I’m thinking of both pleasant and unpleasant non-food smells: gasoline, fragrant laundry detergent, fresh cut lumber, rotting leaves or grass
You made mention of the limits of texture. Does ice chips in your mouth trigger your symptoms? Does chewing gum trigger your symptoms?
1: Just food smells.
2: As long as I don’t chew them, no. If I let them melt in my mouth it’s fine. Chewing is not the only issue. I cannot bring myself to swallow liquid things that are especially thick, let alone solids. But having to chew it is enough to make it too unpleasant to have in my mouth. As I said, it is described by my doctor as anorexia but with a physical cause. It is a total aversion to food. My whole body tells me not to eat. Period.
You haven’t mentioned any conscious aversions to food, so I can barely imagine the frustration of consciously knowing your body needs nourishment but your body being totally uncooperative. Your body gets to use your higher brain functions to identify what is food and not, but then is unwilling to take it in even though you want it. That sounds hellish. I’m sorry you’re going through this.
Its almost like your body is identifying food like its poison and trying to keep it out of you to save your life.
It’s not exactly that I know I need nourishment because I never feel hungry, but I can definitely look at all kinds of food and really wish I could eat it but I know I can’t.
You understand consciously and intellectually that your body requires calories or you’ll starve to death, but your body signals and instincts are uncooperative.
Basically, yeah.
Since this condition gets to know something has nutrition (because you know the thing does), what would happen if you consumed something with zero nutritional value. Something that would have maybe fiber, but no nutrition? Its certainly not food because you can’t live on it. There’d be nothing your digestive system could take out of it. It would just pass through.
It would most likely be solids, so would that trigger the symptoms or could you get it down because its not foo?
There’s nothing really to trigger because it never isn’t true that I don’t want food except for maybe a second or two here or there where I think, “I could e- no, I couldn’t eat.”
But my wife gave me a single strand of cooked spaghetti to try and I had to spit it out.
My only basis for understanding is myself and what I think may be normal hunger and satiation response. When I feel hungry, I want to eat until satisfied. You’re communicating you don’t (rarely?) feel hunger response, so you don’t (rarely?) feel compelled to eat food. This makes sense to me.
When I’ve eaten to satiation, I get a feeling of being physically “full” but further, that I’m not missing anything. However, for example, if I’m low on protein I can eat carbs endlessly until I feel physically sick to my stomach and still be hungry for protein until I eat some and reach satiation. You’re communicating that you never get to either of these stages because you have an active aversion to the intake or presence of food. So its not just the hunger response you’re missing, there’s and additional component causing you to be physically uncomfortable with consuming food, which compels you to not eat and even spit out food you have in your mouth when you try to push beyond the repulsion.
Lastly, even when I’ve eaten to satiation, I can still choose to continue eating, such as a really good tasting dessert, but usually regret eating too far beyond satiation. This is one that I can’t square with how you describe your situation with this example:
You’re nowhere near satiation since you don’t eat, so its not that response. You haven’t eaten beyond satiation, since you haven’t eaten anything, so its not that response. Your body is finding aversion before all the other normally expected gates are passed through.
One more question: