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.
As someone who also struggled for years with unknown health issues related to food, I wish you the best and hope you manage to find some answers
Thank you. It sounds like you did find answers and I’m glad to hear it.
I found 75% of my answer, I suspect there’s still something else. Someone casually mentioned histamine intolerance to me and I had a “holy shit” moment after reading the signs & symptoms. The Wikipedia page didn’t even exist until 7 years after I started trying to figure it out, all I knew is I got migraines all the time and just generally felt like crap.
It’s amazing how little we know about the human body still.
I know this!
We had a student when I was at a university who could only eat 5 things on this planet because of his histamine allergy: zucchini, plain white steamed rice, unseasoned chicken breast (and I forget the other 2) but after a couple years he was able to add a couple more things to his diet- each item was celebrated by the staff.
Grest kid, extremely positive about his condition, and usually in a good mood!
I hope you find some answers soon OP.
I knew someone allergic to corn. Which is not only in tons of processed foods, but also used in things like building insulation. She was WFH years before that became a thing because she got special dispensation.
Similar story. I have this: https://en.wikipedia.org/wiki/Eosinophilic_esophagitis
Wikipedia case mentions the first case being diagnosed in 1978 and it only being recognized as a distinct disease in the 90s, in large part I suspect because many of the symptoms might be from something else or waved away. Also you’re only likely to find out you have something like this, if your symptoms are bad or worsen significantly. Otherwise it’s your normal.
Fascinating how little we know about the human body, tbh.
Just chiming in as a fellow sufferer of Eosinophilic esophagitis. I’m lucky so far at least in that just basic long term antacid treatment has been enough but we haven’t figured out triggers.
That sucks, but I’m glad you found at least a part of the answer. Migraines are awful. The nerve disorder I mention is kind of similar to migraines and it’s initially what they thought was the problem with that (that also took ages to figure out), so I absolutely sympathize.
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.
That’s great! We had a Dr. Slaughter and a Dr. Nice at the hospital in the town where I grew up. There was also an allergist named Dr. Ruff. Dr. Ruff was really, really nice as was Dr. Slaughter. Dr. Nice was not all that nice.
There was also an optometrist named Steven I. Ball.
Was Dr Slaughter a paediatrician? If so, we may have the same home town. There was also a Dr Blood (oncologist) and Dr Bones (psychologist).
I only saw him in the ER, but he might have done pediatrics. I don’t mind telling people where I grew up, it’s not really doxxing myself. Bloomington, Indiana.
That means there’s two Dr Slaughters. I’m in Auckland, New Zealand.
I guess the Slaughter family is spread out across the world but maintains an interest in medicine.
I’ve met a gastroenterologist named Dr. Brown
This sounds made up, but even if it was, I wouldn’t mind, it’s too great
Also, get well soon!
Thank you, and I swear it isn’t.
In fact, I can offer some proof from some posts I made on another forum, although it also shows that I got the order and details of stuff happening all screwed up in lots of ways. Like I thought I stopped eating for 6 weeks in March. Apparently it was 21 days. Oops. It’s been a long year. I’m glad my wife has all this stuff written down or I’d be fucked.
So I’m not eating again. Haven’t eaten since Tuesday morning. Going to the gastro doc on Monday. It’s going to be a long weekend.
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/889?u=flyingsquid
So I went to the gastro doc today. Same doc that did my scope and found my ulcer. He didn’t remember, but I’m sure he does a lot of them. However, he didn’t seem to care that I wasn’t eating. He told me to keep taking my medication with food, even though I told him more than once that I wasn’t eating and add 15 ml of Mylanta every morning, then call him in 2 weeks if I’m not better.
2 weeks more not eating will tie my last record I guess.
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/989?u=flyingsquid
So… day 20 of me not eating. 21 was the length last time. I’m surviving on ensure and gatorade. I get to call my doctor today to tell them nothing has changed and I’d really like a solution before I starve to death.
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/1344?u=flyingsquid
Etc.
Just to be clear - the names of the doctors sounded made up, not your condition!
Oh, gotcha.
I’ve seen you all around lemmy, and always enjoyed your takes on things. It’s crazy to learn that you’ve been going through all that all the while. I hope things get better for you, man!
Thanks, I appreciate it!
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).
Good Luck on the clinic!
Haha, I get what you’re saying, but it’s not that I don’t realize that, it’s that I would happily eat what they represented.
Does a real Big Mac look like the one in the ads? No. Would I eat it? Absolutely. Was it something I ever ate when I could eat? Nope.
But when I see the ad, it makes me wish I could eat a Big Mac that looked like a real Big Mac.
Anyway, thanks!
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’m really sorry to hear that. I’m 46, so I definitely understand the bleakness at this age. My grandmother died of pancreatic cancer and died in agony. I’m not sure how similar that is, but clearly getting diseases of the pancreas is pretty awful.
Is a transplant a possibility?
Probably not here for me in America (F yeah!). I’ve been hospitalized with multiple over night stays like 18 times or so since it started. They took my gallbladder for good measure… it was fine… should have left it. Lets throw paint at a wall and see if it sticks! I’m fine. People deal with way worse. I just hope you and yours are as good as you can be.
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
Thanks very much. Who knows, it very well could be that. I just hope it gets sorted out at Mayo.
ARFID was my first thought too. My partner has it and it’s pretty intense.
Very sorry you’re living with it in your household. It’s a such an incredibly powerful thing. I couldn’t believe how texture, colour, presentation, sound - so much! - all played into making life difficult.
We take a good meal for granted.
My professional medical advice as a medicinal professional is to hey hey hey hey smoke weed every day
For me, quitting cannabis improved my condition but never got rid of it completely. It gets worse if I smoke consistently, I expect I might have been having something similar to CHES(?) (cannabinoid hyperemesis syndrome or something like that) which was worsening my symptoms. It’s never been as bad as it was when I was smoking, but it’s never gone back to normal.
As someone with a medical cannabis prescription for chronic pain, and absolutely no medical background, I fully agree!
I’m a big believer in medical cannabis and use it myself all day every day for chronic pain can confirm it’s amazing
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!
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.
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?
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.
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!
Thanks!
Maybe you should try getting COVID so you can lose your sense of smell lol.
That’s really a bummer but also a super interesting case. Can’t wait to hear about Flying Squid disease in a medical journal someday lol
I got COVID in between bouts of not eating, so that was fun too. Good news? Most of the symptoms only lasted about 3 days. The bad news? At the end of that 3 days, I dry heaved like 20 times in a row. My wife was terrified. And then I felt fine again. 🤷♂️
There’s also this side effect of covid called parosmia, where everything tastes/smells rancid:
Honestly, stuff like that is incredibly frustrating. We take eating, drinking, breathing, pissing and shitting for granted. So when when suddenly you can’t, it’s scary.
Whenever I get really sick, which happened with Covid, this happens to me but not for every single food. Just a lot of food tastes rotten. Fortunately the last time it only lasted for about 5 days. The worst is anything with vinegar in it, which so many foods use in small amounts (sauces, etc.) but becomes inedible.
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 ❤️
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!
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.
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!
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!
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.
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.
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!
Thanks!
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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.
