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.
I had the same issue, I only had a few safe foods. I have a mast cell related disorder. I’m on a slew of meds to help, but the thing that helped more than anything else was getting my chronic, 24/7 stress under control. It turns out being keyed up all the time isn’t good for you. Who knew?
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.
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.
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.
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.
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 met a gastroenterologist named Dr. Brown
My professional medical advice as a medicinal professional is to hey hey hey hey smoke weed every day
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
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.
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!
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.
Sounds like fun. And yeah, they should have left my gallbladder in too, but it’s not like it’s necessary, so I’m not too broken up about it. And I hope the same for you and yours!
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 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.
Damn dude that sucks! I hope they can figure out what’s going on with you and get you sorted, that sounds like a pain!
Thanks. It is a pain. But like I said, I feel fine most of the time so most of the pain is psychological- wishing I could eat stuff I see that looks good (or even not that good, my daughter got Peeps for Easter and I thought “I’d eat a Peep or five.”) and not knowing what’s wrong.
Obviously, that’s not nothing, but at least I’m not in physical agony or anything. And my family has been very supportive.
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!
Oh, man. All this time I was reading your posts (which are usually fantastic) and of course I had no idea. I am genuinely sad to hear that you’ve been going through your own hell all this time.
As a person who has had to fight my own bizarre health battles with diseases that do not offer textbook compliance in spite of their absolutely correct labels, the only wise words I can give you are the ones I was given once. Simple, maybe stupid even, but they made all the difference in the world: you are the medicine.
That is to say, whatever is going on, some part of your body and mind knows exactly what it is, just without the ability to tell you in spoken words. Your body is talking to you all the time, and it is telling you the truth, but it is up to you to listen, and then to decipher its code. This shifted my focus away from the mostly empty effort of desperately seeking answers outside myself – which can be a recipe for not wanting to be here for more, as well as an invitation to grifters – and toward remembering that I still have the wisdom of the body itself, and the ability/responsibility to not turn away from gut calls when something really resonates as being right or wrong. That makes illness and health something I can succeed at no matter what, and all I have to do is not give up. It looks exactly the same from the outside, but the inner difference is profound.
This – the recognition of your own inner knowing and wisdom – is especially important for you because you are now living in the land of multiple diagnoses, which means you will meet FAR more of your share of medicos that want to chalk it all up to X or Y when you already know goddamn well it’s not either, it’s a thing of its own. So let me just say: your instincts are excellent. They got you this far. Don’t discount them. And if you’re ever in a care or treatment situation where lack of objective knowledge forces you to you have to choose between your gut and someone else’s call, tend toward your own inner certainty. You may not know everything; you may not even know much at all. But what you do know, you KNOW. Never forget this.
As hellish as it can be, shitty health often has strangely valuable lessons for us. And as sorry as I am to hear that you’re getting some of your lessons from the same medical school of hard knocks as I am, when I read the above post, all I could think was that in return for this horrible thing you’ve been given some great gifts: more time with your family, a chance to be more involved in your daughter’s life and schooling, a greater dependence on wit and resources other than money, a deepening and enriching of the relationships that are capable of it, a more profound reliance on the love with which you are surrounded at home. And all of this at the precise moment when our country is becoming quite dangerous for many of us, and your presence as an engaged husband and father is most desperately needed by those you love. I’m not saying you should be grateful; not at all! This is still complete and utter shit. But you’re not empty handed, either – and in what you do have, you are far richer than many.
I very much enjoy your posts and hope to continue reading them for many more seasons to come. As so many others have done here as well, I wish you and yours the absolute best. Thank you for letting us know what you were dealing with, and I hope you give us updates if and as you see fit. If you ever need to howl, or just to be heard, my dms are always open. Every blessing to you and yours, and especially for a successful outcome at Mayo.
Thank you very much for what you have to say and I appreciate it.
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!
Thank you. As for finding something as bland as possible, my wife gave me a single piece of cooked spaghetti. I tried really hard to eat it, but I had to spit it out pretty quickly. I ended up in tears because I thought she was blaming me for it as if I wasn’t trying hard enough, although she says she didn’t (it really felt like she did).
Unfortunately, smell doesn’t matter. It’s food. I have to chew and swallow it. And even if I have to swallow it without chewing it, like applesauce or yogurt, it’s still food. I can’t explain it better than that. Ensure is about as thick a liquid as I can handle.
Fwiw, she was probably just frustrated by “the situation” - like how you wanted to be able to provide food for your daughter, but could not. It’s gotta be rough and I hope they can find a fix for it ASAP, even if only in stages and that may take some time as well.
Probably. She has every right to be frustrated. It was just a very inopportune time for it.
You feel what you feel though. Both of you did.:-)
For sure.
Well, I hope your cake looks really delicious!
And that the Mayonnaise clinic helps you out.Maybe if I bring them the cake. And make it a mayonnaise cake.
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 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.
How thick are they? That’s the biggest issue for me.
I can’t say anything about Soylent but it might be a good substitute. I thought there was some kind of issue with them (I think their target market was the “code academy” types), but I might be misremembering.
However, I can recommend Boost. It has something like 100 more calories than Ensure, and like Ensure I can down a bottle in a single go.
I’m currently going through something similar (although I did mostly stop getting sick in the morning), and I’m toggling back and forth on the solid food thing. I’d be interested in learning more about your diagnostics.
Sure. I’d be happy to help. I will try to remember to reply to you after the Mayo Clinic to let you know what’s up. Or if you want to PM me, I can give you my email address. I have a really bad memory, so please shoot me a reminder. Mayo could take up to 10 days and I have to check in on the 22nd, so if you check in with me 10 days after that either on Lemmy or by email, I’ll let you know what happened.
Thanks! I will check back.
Hey, remember my bad memory? My mother reminded me this morning that I’m going on March 26th, not March 22nd. It’s etched in my mind as the 22nd.
It’s not thick but not thin. I would say it’s similar to melted ice cream.
Hmm… sounds about Ensure level. Worth checking out anyway. Thanks.
You could thin it out with water too. Soylent comes as a premixed beverage or as a powder if you want it cheaper.
They are very similar. Boost was my go to when I couldn’t stomach anything but rice.
The thickness is my biggest problem, although flavor is an issue too, even if it’s an underlying flavor or an aftertaste. Muscle Milk had such an awful aftertaste that I had to brush my teeth.
I second this! Soylent is a great meal replacement for me too personally
I hope the Mayo Clinic can help you out dude. I always enjoy chatting with you on here and reading your takes.
I hope so too. Thank you!
