It's a very special anniversary for me: I haven't had solid food in my stomach for six months as of 9:30 this morning. [This is a very long rant, please no medical advice.]
It's a very special anniversary for me: I haven't had solid food in my stomach for six months as of 9:30 this morning. [This is a very long rant, please no medical advice.]
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.
Good job getting an appointment with Mayo Clinic! I know this has been really tough for you and I hope you get some good answers. I also look forward to hearing about your progress.
I'd also like to take a moment to appreciate the fact that you're going to the Mayo Clinic for your issues with food. If the universe is paying attention, you'll hopefully somehow cross paths with Dr. Burger or Dr. Ham.
Been fighting a dying pancreas since 2016. Dropped from 212 to 120lbs. My body doesn't Absorb the food I injest. Pancreas dumps awful amounts of acid into my stomach. I throw up almost daily sometimes up to a dozen times. I take very expensive pig enzymes to compensate for my body not absorbing food. It's an absolute mess. I feel your pain. At 40 I'm feeling pretty bleak. Hang in there. Pancreatitis is a terrible thing. Especially chronic
I knew someone who went over a year without solid food. They have only recently started introducing solid foods, which is slow and very controlled.
They were diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID). It caused them, through this eating disorder, to struggle to engage with solid food.
Of course I'm not saying this is what it is (I'm not professional!), and I wish you the best in your journey. What I want you to know is there is so many good professionals out there, as well as liquid based foods that act as supplements in the meantime. Be the best you can be and enjoy life as much as possible as you conquer it.
All the best
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!
Maybe look into Soylent drinks. It's nutritionally complete, as in you could just drink that and not supplement with Gatorade or V8, and it comes in different flavors. You can order from the website or buy at Target and other retailers.
Yes, I know it's a movie about people being recycled for food. The guy who invented it was a software engineer who wanted something easy, simple, and nutritious that he could take for lunch while working, and he thought it would be funny to name it Soylent.
I've been taking the powder and drinks for several years now. Favorite drink flavor is strawberry.
American healthcare does suck donkey balls, but I am glad that you are able to find a source to get the diagnostic aid that you need.
Knowledge is power, so whatever the cause, if you can find ways to deal with it (like somehow eat food that has no smell? well you already said crackers don't work... but if you can find SOMETHING) then that would be great!
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.
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.
Again, please no medical advice or suggestions.
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.
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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
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You made mention of the limits of texture. Does ice chips in your mouth trigger your symptoms? Does chewing gum trigger your symptoms?
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I had something similar, but instead it was feeling full and nauseous with just a few bites. Food smells were the worst, and can still trigger nausea for me. I never really got around to figuring out the cause because I was bad at getting healthcare for myself. But it cleared up, weirdly, around the time I had my wisdom teeth taken out. I got my life back after that, and I hope you do too very soon.
Wishing you the best and hope you get some answers with your upcoming visit.
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
Is that FMLA why you've been posting up to 8 times daily? Cuz I see you everywhere on lemmy lol
All I can say is I'm sorry you're going through all this and the pressure it has put on you and your family.
I really hope you're able to nail down the source of this, having an "unknown malady" is the worst, I've been through it at least three times with my partner where each time it took literally years for doctors to figure out what was happening. It can take a lot of time, but if you keep reaching out to specialists, and you keep ruling out things it isn't, eventually you'll find something that works.
Coming from someone else struggling with their and their families health: I wish you and your family nothing but the best, and I sincerely that you either find a solution or a manageable way to cope.
As someone also with a largely mysterious, if diagnosed, medical condition, have you tried meditation?
Just kidding! I get tons of well meaning, often worthless advice, but that's by far the most common. I'm like, bitch, I meditate so goddamn much I'm giving the fucking Buddha pointers. Meditation is the only reason I'm not throwing you (and maybe myself with you) out the window right now.
If I may give you one non-medical suggestion from someone who has been there and to some extent still is there, it'll get better as long as you don't give up. You have to be dogged about improvement and it won't be fast or easy, but it'll be there if you put in the work. People who don't understand will think you're being crazy and obsessive, telling you that you need to just come to terms with your condition. Coming to terms is a part of it, but there's always, always something to try. Improving my condition is my biggest hobby and primary job.
I've been plugging away at improving my health for four years now and went from barely being able to function to being 80% normal. I'm working full time again (I know, oh joy) and I can do a lot of the things I used to be able to do. You'll get there, just keep at it. Let me know if I can help or if you ever need to talk, even just to vent.
That's terrible, and I'm saddened to read about this going on still.
As misery loves company... I struggle with various health problems that are also hard to diagnose (autoimmune in nature). Doctors weren't super helpful. I blew through almost all of my savings which took a lot of effort and penny pinching to gather. I was unemployed from November 2020 through July 2023, and I wanted to not live anymore. I was never quite suicidal, but I was on that path. Things got dark.
Little by little I made progress. Gluten turned out to be a major contributing factor in my overall bad health. Cutting it out of my diet wasn't easy or enjoyable, but it was a massive change for the better. I was no longer in crippling pain, overwhelming fatigue and my anxiety vastly improved. I found employment again!
Just as I thought I was turning a corner, I get hit with a rare genetic heart condition. I was in danger of having a stroke without knowing it. Now even though there is a new medication I am taking to address that condition, it comes with a lot of potential interactions with other medications. That means I had to give up the one other medicine that helped me get through my chronic pain and other issues, and in so doing I have discovered even more food intolerances are to blame beyond what I already knew. I can now eat basically nothing prepared from a store or restaurant if I want to be functional.
Even so, day by day I manage to get a better grip on my health issues that have plagued me for most of my life. To get there I had to persevere beyond that I had previously thought of as being my limits. I believe this is where you are right now, unfortunately. I wouldn't wish this fate on anyone (okay, maybe a certain fat, shit stain ex-president and his toadies).
I hope you find your answers! Keep us posted! I'm rooting for you!
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.
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 ❤️
This isn't medical advice but I need to know if you are still getting an okay diet lol.
I recommend 90% protein whey isolate, powdered peanut butter powder (they take the fat out to make oil, the remainer is 50% protein (!!!) and is rich in iron, potassium, fiber, etc, they usually put sugar in it but walmart doesn't lol so i get theirs, combined with cocoa powder and protein powder it is decadent), and yogurt
You also should keep chewing stuff so your jaw muscles remain healthy. How about gum? I think chewing plastic is unhealthy but many swear by the power of the chew
That's a very interesting story.
I too have trouble eating anything solid sometimes. It's just too much. I couldn't digest it, I couldn't even swallow it. But fortunately, the supermarket where I live sells liquid food, basically like a milkshake, for low price over-the-counter. So I drink that a lot. It's not "normal", but it works for me. Cheers.
Also, what do you personally believe the reason is? Do you have any spiritual thoughts on this?
So, I'd like to explain my personal view: In older times, it was believed that spirits sometimes take possession of humans. These humans are called "schamans". That causes a series of symptoms, including: dry heaving (especially during the "initiation" period - the initial phase). This is supposed to "clean the body (and also the mind)". The stomach is seen as the "center" of the human (because it is almost completely in the center of the human) and the dry heaving is kinda "throwing out" bad thoughts from your most inner self. During that time, to not complicate the process, people don't eat solid food, because eating solid food would require greater physical strength, and the stomach is busy. TL;DR: Dry heaving is IMO a spiritual "cleaning" ritual, and not eating solid food simplifies the process.
