this post was submitted on 20 Feb 2024
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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.

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[–] [email protected] 2 points 8 months ago (1 children)

I'm so sorry you're going through this. Ive had periods of pretty strong food aversion and nausea to the point I was underweight because I just really Did Not Want to eat food. I had to drink meal replacement shakes because the nausea was so bad. I never experienced the heaving or complete inability to keep food down. Actually throwing up was kind of rare but did happen.

I had always taken my enjoyment of food for granted and I still go through ups and downs with my food aversion. Currently I'm able to enjoy many foods I usually do though I get sick of eating very quickly. I'm happy about that. I can't imagine going through what you're going through. I know when I had my struggles most people just didn't understand and I felt super unheard and invalidated. I hope that you at least feel heard and supported, and here's to potentially being able to enjoy solid food again one day.

Wishing you the best ❤️

[–] [email protected] 2 points 8 months ago

I had always taken my enjoyment of food for granted

Absolutely, me too. I loved going out to restaurants and trying food from different countries. I'm sorry you went through something similar and I hope you find a solution. Thanks for the best wishes!

[–] [email protected] 6 points 8 months ago (1 children)

Damn bro maybe you just have a cute lack-of-weedism.

Seriously though hope you feel better. Never stop shitposting.

[–] [email protected] 1 points 8 months ago
[–] [email protected] 5 points 8 months ago

Is that FMLA why you've been posting up to 8 times daily? Cuz I see you everywhere on lemmy lol

[–] [email protected] 11 points 8 months ago (1 children)

Do you not know what to say when people compliment your weight loss?

For no reason any doctor could tell my body decided I needed to be in extreme pain whenever I ate solid food.

So I went from 230-130, and people will be like "wow you look great!" And it's just like "thanks! My body has betrayed me and I'm very confused!"

Luckily I got some medication that let's me eat rice and veggies.

Fingers crossed for you! Maybe they'll just evict your stomach!

[–] [email protected] 4 points 8 months ago (1 children)

Thanks very much and I'm sorry to hear that.

The funny thing is, I still look kind of fat. Like I still have a big gut despite being almost at a supposedly ideal weight. I definitely look thinner, but I don't look average in terms of weight.

[–] [email protected] 7 points 8 months ago (1 children)

How people hold weight is wild.

I'm curious if you'll get a crazy "we're gonna fix this!" doctor!

That's how my sister got a gastric bypass to treat her gastroparesis! (It worked, because her stomach got fired.)

Then another person I know somehow had the ability to vomit removed?? (Instead of vomiting they are now just nauseous all the time and can't vomit)

Like the way they treat stomach issues is truly WILD. They just don't know what is going on with that organ do they?

[–] [email protected] 3 points 8 months ago (1 children)

Then another person I know somehow had the ability to vomit removed?? (Instead of vomiting they are now just nauseous all the time and can’t vomit)

That sounds absolutely horrible. I don't know how I could live with that.

As far as a crazy doctor like that? Sure. Why not? I'd rather have a guy like that than the GI surgeon I had who basically threw up his hands and said "I don't know what the issue is!" He didn't seem to give a shit that I wasn't eating either. Like over and over again I'd leave a message saying "I can't eat" and I'd get a response telling me to eat small, healthy meals and not smoke weed.

[–] [email protected] 7 points 8 months ago (1 children)

Ugh, yeah. At least the crazy "we are gonna fix it" docs keep trying. My sister's crazy doc laid out a 6 step plan where the last two points were "feeding tube" and "build you a new stomach with a gastric bypass". The feeding tube worked, which made him confident replacing her stomach would fix it.

Compared to the doctors who just keep prescribing the same meds and saying to eat lots of fiber. Like do you think I'd be 50 visits and 6 docs in if fibercapsules helped?

Fingers crossed you find yourself a doctor with a unique thought that isn't gonna give up so easy!

[–] [email protected] 3 points 8 months ago
[–] [email protected] 8 points 8 months ago (1 children)

I know you said no medical advice, but I'm not a doctor, so this is just advice.

Have you tried threatening your other organs? Like tell them you know that one of them is responsible and it's only a matter of time before you figure it out, and they saw what you did to your gall bladder and if they don't sort out their shit soon, they will be next. Tell them your gall bladder is in a mining camp in Siberia, unless Putin sent it to die in Ukraine.

Anyways, hope either this works, that you get over your fear of medical advice before you go to the Mayo Clinic, or that their selection of mayonnaises is enough to kick-start your appetite again.

Best wishes!

By the way, on a more serious note, since you can handle liquids, have you tried smoothies or something a bit heavier that you don't need to chew? Apologies if this has already been addressed, I didn't read much of the comments thread.

[–] [email protected] 4 points 8 months ago

I will see what I can do about getting a gun surgically implanted.

As far as smoothies, some are way too thick, others I can handle. I think it depends on whether or not they put yogurt in it? I'm not a huge smoothie fan though.

Thanks for the best wishes!

[–] [email protected] 7 points 8 months ago (1 children)

So sorry you’re going through all of this. As an ER provider I feel so terrible for the patients I see with chronic gastrointestinal issues. I always try to do some things to broaden the differential (I’ve had some pretty clutch diagnoses of chronic mesenteric ischemia in cases like yours by doing a CTA instead of just a CT—usually on patients who have had multiple CT’s), but there’s only so much you can do with the resources available to us in the ED. I always place a GI referral, but I feel like most GI’s actually ignore the chronic stuff if scopes are negative. It really sucks knowing a lot of possible answers but not being the person who can test for them.

Hopefully Mayo helps. Almost sounds like you have some sort of GI motility issue—I wonder if your trigemial neuralgia is actually a more nuanced symptom of an underlying CNS/PNS unifying diagnosis.

[–] [email protected] 4 points 8 months ago (1 children)

Thanks. I'm also not in a big city, which limits what hospitals can do, and makes it less likely to have really good GI docs (because this is not exactly a desirable place to live). Mayo has far more diagnostic tools and that alone will make a big difference.

[–] [email protected] 4 points 8 months ago (1 children)

I think it definitely will. I’m at a large medical center and it’s always surprising what we’re able to do (that we consider to be basic) compared to rural places. Fingers crossed!

[–] [email protected] 2 points 8 months ago
[–] [email protected] 6 points 8 months ago (1 children)

Hey Squid. I'm sorry I missed this post. I'm glad you are gonna get treatment at Mayo, and I'm also glad to see you're asserting an "I need support, not advice" boundary. It's inspiring, as I'm trying to do that for myself right now... because JFC, hearing proposed solutions is exhausting when what you really need is someone to listen and empathize. I'm just now realizing people cannot read my mind, so I guess I gotta be direct.

I wish you the best, man. DM me any time you need to vent, even if it's just a quick "argh dammit this sucks!" I won't ever recommend Vitamin F supplements or whatever

[–] [email protected] 5 points 8 months ago

Thanks, I really appreciate it. It sounds like you need some solutions yourself, so I hope you get them.

[–] [email protected] 3 points 8 months ago (1 children)

They may not have answers for you at Mayo Clinic, but don’t be discouraged! Keep fighting until someone can help you figure this out!

[–] [email protected] 4 points 8 months ago

They may not, true, but I will have to work hard at figuring out my next step because I honestly don't know where else to go, at least in the U.S.

[–] [email protected] 3 points 8 months ago (1 children)

I'm sorry your going through this. I had a stomach ulcer and couldn't eat much solid food during that time. I survived on ensure, plain white rice and bananas. I definitely feel for you and hope that you are able to get some answers. My husband has been down the mystery medical problem route and it's maddning. I wish you the best of luck, Mr. Squid.

[–] [email protected] 2 points 8 months ago
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