Today is my one year anniversary of not eating solid food.
Today is my one year anniversary of not eating solid food.
Before this starts: This is just me needing to write a hopefully not too long recent autobiography to get things out because I need an outlet.
PLEASE NO MEDICAL ADVICE!
I have asked that in other threads when I have talked about this, but I am going to have to put my foot down this time because people give it anyway and say that even if you have something else to say, I will not respond to a post with medical advice. I work with doctors, not people on the internet. If I want advice on this subject, I want people with medical degrees who understand science and are familiar with my medical history to give it to me.
Also, please keep the pity to a minimum.
I apologize if the timeline here is a little messed up, I'm mostly relying on memory because I don't want to dig up a bunch of notes.
My journey started in December of 2022.
I just started dry heaving every morning soon after I got up. Other times too, not literally every morning either, but mostly within 10 minutes of getting up almost every morning. Nothing every comes up. It's always dry heaving.
In March, I just stopped eating. I wasn't hungry or thirsty. I knew I needed liquid if my mouth got dry. The idea of food wasn't appealing. Even very light smells of many types, especially cooked food and flowery smells, disgusted me. It took effort to swallow my pills. After a week, I was drinking ensure and Gatorade to make sure I was getting nutrition and electrolytes.
Then there involved multiple trips, first to a clinic, then the ER, then doctors, then back to the ER to get tests until, about six weeks later, a nurse handed me some crackers and stood in front of me while I ate them. I did it without very much effort and suddenly I was eating again. I think I lost about 25 pounds, but I was quite overweight- 260 pounds and 5'10" (sorry, rest of the world for using dumb American units). So that was not a bad thing at all.
In May, the whole family got COVID in case you were wondering if this was COVID-related. In other words, that happened after all of this started.
I was scheduled for a colonoscopy at the beginning of July (if you're getting into your mid-40s, enjoy the absolutely awful prep). We went ahead and scheduled an EGD as well- that's where they send a scope down your throat. They discovered an ulcer. Aha! That must have been the problem!
So I take the Pepcid the doctor told me to take and then I had another EGD weeks later and the ulcer was gone. Problem over, right?
Nope.
August 22, 2023. 9 a.m. I had a bowl of Special K. It was the last solid meal I have ever eaten. Once again, I just wasn't hungry or thirsty. I didn't eat the rest of the day. Or the next. Smells drove me crazy again. Just the thought of food in my mouth made me totally disgusted, like putting shit in your mouth. I went back on the Ensure and Gatorade diet, since liquids have never been an issue.
I should add that seeing other people eat or seeing pictures of food- doesn't disgust me. Sometimes it makes me sad because I'd like to eat it too- there is this Nepalese restaurant that opened here something like a week into September 2023 that I have been dying to try- but the basic concept of eating does not bother me. It does not make me anxious or disgusted unless I dwell on the idea of what it would actually be like to have it in my mouth. Imagining the taste is fine. There are restaurants I'd love to go to. You could think of it the way you might react when you see a really cool car or expensive gadget- "I'd love to have that, but I couldn't afford it." It's like that. "I'd love to eat that, but I don't have the ability to do so."
But then when it actually comes to it in my mouth... once my wife basically forced me to put a part of a single strand of cooked spaghetti in my mouth and it made me nuts. I couldn't chew it or swallow it and I just got more and more anxious until she accepted that I just had to spit it out. My wife and I generally don't fight, but that was not a good day in our relationship.
I went to doctor after doctor, test after test. Bloodwork wasn't surprising, nothing wrong with my kidneys, nothing wrong with my brain (my neurologist actually called it one of the healthiest brains she ever saw, whatever that means). I use cannabis for a different issue- treating pain for a really bad nerve disorder called trigeminal neuralgia. Cannabis sensitivity was also ruled out. I had a HIDA scan, which is about gallbladder function. The results were sort of between "nothing to worry about" and "possible issue," so I had it taken out in case that was the issue. Getting your gallbladder out is like getting your appendix or tonsils out- you're basically fine without it even if it's healthy.
On December 20th, yes, it took that long despite supposedly in countries with national healthcare, "the wait times are terrible," I had my gallbladder out. It did not help.
We were getting desperate, so I wrote to the Mayo Clinic and they accepted me to go there in March. But the experience was so bad, totally on their end, that I got a refund. We did discover a few things from that visit:
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If my mouth was numbed entirely with lidocaine, I could handle a couple of small bites of food before I couldn't take it anymore.
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There was no indication of anything gastrointestinal or neurological.
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A behavioral therapist suggested that something (we don't know what) caused my parasympathetic nervous system to fuck up and I might have an eating disorder known as ARFID. It's only recently been categorized, it used to just be "eating disorder, other specified," but apparently more is known about that now.
Since then, we have spent months trying to find someone to help me. Either they didn't accept our insurance or they just rejected me outright. Finally, last month, the Charis Center for Eating Disorders, a clinic associated with, oddly enough, Riley Children's Hospital in Indianapolis, agreed to evaluate me.
That brings us to today when, by a very odd coincidence, I got that evaluation. They think they can help me. The doctor who I saw will consult with other health practitioners there to see about a full care plan for me. I meet with a nutritionist next week to see what I can do to work on a diet plan that is better than what I'm doing now (more on that below). Meanwhile, I need to come up with a plan of my own to slowly thicken the liquid I am drinking until I can take soft food and build up to a specific solid food I have a goal of eating (which will probably be something Indian). I'll be working on that this week.
She also began by asking my why I think this started and when my wife I made it clear that we had no idea, she said something that had never occurred to me before: it doesn't matter how it started, it matters how we fix it.
So... here is my life right now.
First, in terms of nutrition:
7 am, two Ensures.
9 am, tea.
10-11, possibly a "fun" drink if my mouth feels dry. I'm partial to Jumex Guava nectar lately.
12 pm, two Ensures, two V8s for electrolytes and fiber, also some fiber capsules for added fiber because fuck Gatorade and you have no idea the level of constipation I've had to endure.
Any time between 12 and 5 I might have other "fun" drinks if my mouth gets dry.
5 pm, two Ensures, two V8s.
6-8, a small glass of port. Or, lately, some Zing Zang Blazing Bloody Mary. Fuck yeah. Gotta have some enjoyment here. (The Bloody Mary is only 9.0 ABV, I'm not getting drunk.)
After that, I try to limit my liquid intake so I don't keep going to the bathroom all night.
You have no idea how hard it is to find savory things to add to this. Everything people normally drink is either sweet or bitter. Recently, I discovered there are some broths that are not just "chicken stock" or "beef stock" or "vegetable stock." It was a tough decision, but I have put my vegetarianism on temporary suspension just so I can have some savory things like Swanson's spicy chicken broth- incidentally, they say it's a "touch" of heat. That is a lie, unless by touch they mean slap. I mean it's good but I did not expect it to be that spicy. I'm not complaining, mind you. I also got some powdered soup mixes I haven't tried yet.
I don't do a lot of exercise because I just don't have the energy, but I try to walk the dogs at least 30 minutes a day. I usually have to rest after that and it's not high impact, but it's something.
I still dry heave every morning.
Some good news: I have gone from 260 pounds to 177 pounds. I have gone from a 2XL shirt to an XL (I still have a belly, I'm guessing I always will) and from XL pants to medium. In other good news, I no longer have high blood pressure or high cholesterol and have been taken off that medication. Aside from one vitamin which is unusually high, all of my vitals in the very extensive blood work I got done at Mayo are within normal levels.
There was also some good timing here because soon after I decided to take (unpaid) medical leave from my job, my daughter, who had been bullied for years for being too different from the other kids- she's queer, she wears punk clothes, she listens to old music, she's much more interested in old cult movies than recent popular ones, she likes talking about weird stuff like abandoned malls and what they used to do in insane asylums and the only video games she's into are retro games. She had a total breakdown involving her Halloween costume that I won't get into- but basically the whole school ended up piling on her. We took her out the next day, I quit my job and we put her in a public online school the state offers. It's worked out really well for her because she's getting good grades and finally building up some real self-esteem.
And, despite all I just told you, in terms of health, other than the low energy I basically feel okay most of the time. Just never hungry, never thirsty, and unable to take a lot of smells. It doesn't even make me upset or even sad at this point. It's just my life. I went to a meetup with a bunch of people I had been talking with on a small forum for years but never met. It was a great time, but I spent basically the entire time outside their house to avoid the food and cat smells. I stayed in their camper, parked in their driveway. It was comfortable enough, so none of that bothered me at all, but everyone else kept feeling sorry for me.
I hate people feeling sorry for me. If they want to feel something for me, feel angry because I am beyond it even though I probably should feel it. I actually cut contact with a couple of people because I just couldn't take the pity party I got every time I talked to them. This is just my life now. I've come to accept it and I am okay with it until I can fix it. On a day-to-day level, it just doesn't upset me.
Really, the ones who have suffered the most in many ways have been my wife and daughter. I have made it very clear to them that I want them to have as normal a life as possible despite this issue of mine. I have an office in the garage, where I am typing this right now, that I am happy to go out to when they're cooking. I don't mind not going to restaurant with them. But they feel guilty anyway. Of course they do.
On top of that, my smell sensitivity has really limited the places I can go with them. Any store that has a strong smell, I may have an issue with. For example, I have to speed by the hot food section in the supermarket. Weirdly enough, the one place I can go that is food-related that I almost never have a problem is cafes. Coffee smell does not bother me whatsoever.
If if I'm out with my daughter and she wants food, that's a real problem. We definitely can't get takeout. I can't handle that smell in my car, which really sucks for a teenager, although thankfully her mother is fine taking her if she's available to do so.
So yeah, it's been a year since I've eaten a meal.
I hope it won't be two. I don't know if I can make it to two. My energy keeps getting lower and I'm still losing weight, albeit much more slowly, but I'm drinking all the Ensure we can afford in terms of a regular expense. Ensure is also one of the cheaper options, especially since we buy it in bulk at Sam's. No one has suggested I'm dying yet or anything, but this obviously is not a sustainable situation in the long term.
I hope the Charis Center will solve this problem for me. Hopefully we'll also eventually be able to pay off all of the medical debt.
Thanks for reading if you made it to the end. No tl;dr. There is no way I am summarizing this, sorry.
Good grief. I see your posts every once in a whole, i cant believe you are still dealing with this. :/
Im just an empty headed cat girl, and thats a lit of words but sounds like still no answers??? How wild.
For a savory drink…. Not sure. Probably would have to make your own. Mushroom broth or something idk. Theres also none broth which has more protein.
I hope you find a solution soon! Thanks for the update!
Thanks. No certain answers, but hopefully this eating disorder path is the right one to go down. I'm willing to try anything as long as it isn't obvious pseudoscience bullshit. But like I said at the start, I generally limit taking health advice to people with medical degrees who know my medical history, so the obvious pseudoscience bullshit has been minimal. The only thing that I thought was nonsense to begin with and turned out to be nonsense was when the behavioral therapist at Mayo suggested breathing exercises would help with the heaving.
They did not.
I did a broth diet for a bit and also prefer savory things. I can second making your own, but I would add seasonings and heat it up, like herbs and spices. For the denser herbs I got a cheap French press to filter out the detritus when I was done. I would throw in all sorts of things and experiment, like ginger, sage, thyme, basil, rosemary, pepper, celery salt, cayenne, bay leaves, mustard powder, turmeric, curry powder, whatever. Really mix and match. I figure you might already be doing stuff like that, I don't know, but I figured I'd throw it out there anyway. I never got to the point where it was boring.
I do hope you find treatment that works.
Huel makes savory powdered food that you could sift the solids out of. You can make it as thick or thin as you like, which might help as an intermediate. I'm vegan and have lived off those meals when my disabilities make cooking too difficult lol. They have a couple curry flavors
To add to this advice, Soylent is a similar food replacement type product. THere are other similar brands that I'm not familiar with at the moment, but those can be some possible options to try if you haven't already.
My two issues with the meal replacement things is that firstly, I don't know if I'll be able to tolerate the smell and tastes and secondly, they tend to be more expensive than Ensure. But I will look into it, thanks.
Thanks for sharing. Makes for memorable bedtime reading. I think you've got the right attitude, for what it's worth.
Thanks.
That's a hell of a journey. It sounds like you have been been making the best of an awful situation while continuing to work towards finding answers. Definitely be proud of that, if you can. As always, I hope you're able to find a solution to the problem eventually.
Since you mentioned looking for savory broths, I want to shout-out Better than Bouillon Sauteed Onion flavor if it's not already on your radar. It's pretty easy to reconstitute with hot water, although it's a little bit more work than a broth bought as liquid.
Also, since you mentioned your goal food would likely be Indian, I'll nominate dal makhani for your consideration, or maybe as an intermediate step toward a more solid food, as it's already pretty close to a porridge consistency. Although you might have to make it at home to dial in the spice level to your taste.
Thanks!
Can you tolerate handling raw meat? Butchers are usually happy to give you scraps (or sell for very cheap) that you could make your own stock with. Can tune the flavour to your liking with whatever herbs and vegetables you want.
No, that would be food. I can't handle food. Thanks though.
While it sounds like you’ve accepted your current predicament, I’m happy to read that your new caregivers have a plan to help you, and ever moreso that you’re continuing to investigate the cause and trying to find a solution. I wish you all the best and hope to find your next post on your recovery is a positive one.
Thanks. I would say that rather than accepting it as something that will be forever, I'm accepting it as something I have to deal with long-term, so there's just no point in dwelling on the bad parts. Just trying to work towards a solution.
You mentioned planning on working your way back up to solid food - if you don't mind me asking, what kinds of liquids/foods are you planning on eating to get there?
Also just curious since you didn't mention it in your post - have you tried other kinds of meal replacement shakes? Is something like a smoothie consistency repugnant to you as well?
Wishing you all the best!
Since I was literally told to make a list this afternoon, I have not really gotten very far yet beyond a couple of options in the chain, a lower end one being a fruit smoothie and a sort of middle one being saag, which I love. But I haven't even figured out what the end goal is yet.
I guess I answered your smoothie question- still too thick, but I can work up to it.
I haven't tried other shakes, but they are either more expensive than Ensure or come in such large quantities (like Soylent) that it would be a huge waste of money if I didn't like it.
I've seen individual bottles of soylent for sale at stores before if you wanted to just try a small amount! https://faq.soylent.com/en-US/where-can-i-shop-soylent-141473
I went through a soylent phase and I thought they were pretty good - the regular flavor reminds me of plain cheerios
I remember reading about your mayo trip and wondered how it was going. Do you like thicker soups like Tom kha or a veggie curry blended smooth? A lot of my school kids have their regular meals fully blended with broth to get the right texture- usually because of physical swallowing issues. Does that work for you at all? Some of the kids with sensory struggles do food chaining, which sounds like what you're working on - very slowly progressing with food similar to things you can currently tolerate.
Can you tolerate jello?
Not yet, but it may be on the list. I'm not a big fan though.
As someone that's had to do a liquid diet before, check the seniors food delivery for options. They're savory, nutritionally balanced (for seniors), and come in a variety of thicknesses. Apparently it's common for some seniors to have swallowing difficulty.
Your mileage may vary based on your local options but it was a butt saver at the time.
Also blending some of my favourite meals with a broth (technically you could use ensure) was a more palatable way of working back up to solids.
Thanks!
"Is it too soon to call you *Chewy* Mr. Squidward?" - *Mr. Spineless Jake ;)*
You'll have to tell me what it is like inside a grocery store some time as a bed time story. /s The last time I've been inside one was probably before covid, and less times in the last 10 years than I can count on one hand.
I totally get the idea of the need to vent, and all. One reason I don't bother trying to go out in public, aside from riding a bike, is because I hate feeling the need to explain why I'm sweating and shuffling around awkwardly, then the crazy questions, skepticism, or attitudes about how thoracic back damage is rare and completely different than what the person likely associates with back problems.
I'm so many apparently visual contradictions it is nearly comical. I'm nowhere near race shape any more, but I'm far too fit for disability too. I just appear like a weirdo with his elderly parents. It isn't worth explaining the details. It won't make sense unless you really spend the time with me and assuming I feel motivated enough to work on something physical where you would see how I fall apart. I don't complain or have any kind of laziness. I'll try to bulldoze through because I love to work on stuff. You'll watch as I make bigger and bigger mistakes and fade into an irritable and dumb shell of the person I was at the start. Still, I just seem off or something from this limited perspective. You would need to spend the next week living with me to see how I harmed myself by pushing too hard and how the physical stress took away my ability to sleep. If I'm lucky, I might recover by the end of the week. That is when you can have a real competent conversion with me and realize some measure of who I am from behind the physical limitations.
We are likely very different in the perception of pain. I was on Adderall long before I got hurt. However, Adderall is empirically my best pain killer. I don't care about the pain, and actually hate anything that alters my mental sharpness and focus. Every muscle relaxer and pain killer I took impacted my mental sharpness or how much I cared about the pain, but it never altered the pain itself or my physical limitations. Based on my performance with cycling and racing in the past, I have a very high pain tolerance. The few times I've messed with cannabis, I check out completely and am unable to move. The effects and haze stick with me and taper for a few weeks too.
I'm hyper sensitive to inflammation due to foods. I won't touch anything dairy. I eat the same things almost every day. I will only add a single new item and wait 2-3 days before determining if it is a potential problem or not. I do not eat anything random or spontaneous. The damage in my back is extensive across a large area. Just getting bloated can put me in excruciating pain where I can't do anything at all. I'm sure you've gone through similar methodologies. It can suck. I thought that I was doomed to bland food for a long time and spent years trying to ignore it. Over the last year I have used the opportunity to tweak what I cook and eat to the point of nearly a 5 star restaurant level of a single course.
Over the last year, I have also played with my own fermentations. I'm making most of my sauces. Think of it this way, all the sauces and stuff you can buy represent what is profitable for mass producing. If you do wild fermentation, anything with sugar will be converted into a savory flavor. Like blueberries come out like a generic slightly fruity soy sauce savory flavor; pineapple is particularly interesting and extremely easy to ferment. It is super active and will generate a sharp carbonated bite. It still tastes a little like pineapple but like a candy savory version. If you add a considerable amount of dark brown sugar to some fresh lemon juice it might come out like the most pucker inducing savory lemon liquor. Start trying spicy chocolate stuff too. I use stock along with fermented peppers juices for spice, some chocolate coco, and a mix of any fermented juices I have on hand, usually some left over coffee too, as my basis for a barbeque sauce. Before I add the corn starch I use to thicken the sauce, it really is a fantastically savory and complex hot beverage.
I don't use anything fancy to ferment. I just make a 3% salt brine with mineral or rain water (no tap), and use a natural mined and unfiltered salt. Don't fill the container with the brine. Try to leave space so that most of the liquid pulled from the fruit by the microbes is what constitutes the final liquid, but this needs to be enough to keep the fruit submerged after the first week or so. I cut the bottom off plastic bottles to insert into the jars to press the fruit down below the liquid. I'm just using whatever old jars I have laying around. I burp the CO2 every morning while making breakfast as part of my routine. If you fail to burp regularly, the jar can build up too much pressure and break/explode. I'm super routine, so it is not an issue for me. The salt kills the bad stuff. Mold is a no-go. So if something starts growing on top, just toss it. It is a wild ferment with whatever was growing at the time in or on the fruit propagating. One culture will eventually dominate all the rest and make up your ferment. This will likely be slightly different every time. I have ruined some from mold, but for every wild ferment I have done, the results have been interesting and useful. You will need to be abstract in your understanding of such flavors and their uses. You'll also need to curb expectations as the outcome is often unrelated to the input flavor. Pretty much everything sweet becomes savory by using this method. Adding extra sugar will generally improve the outcome too. I make some excellent sauces this way and the results are far more complex than anything you can buy in the store. I don't use anything special or purchased; only things that are about to go bad if they are not preserved.
Try Soylent I enjoyed them for a meal replacement
You mentioned you have trouble finding savory things to drink and I've wondered, if you tried or thought of blended vegetable soups?
If you can drink a Bloody Mary, maybe a thoroughly blended tomato soup would be possible too? There are lots of veggies you can work into a smooth blended soup and you can regulate the thickness with adding vegetable broth until it is agreeable with you.
This would also be a food you can easily make very liquid but also bit by bit less liquid until you arrive at a mash or puree consistency.
I know, you said no (medical) advice. I hope this is okay. I'm a nurse and just can't help myself from wanting to help. But I'm also chronically ill and totally get why you are over well meant amateur medical advice.
Just disregard, if it is too much.
It's funny... I like V8 and I like bloody Marys, but I hate tomato soup. Maybe other veggies though. Thanks.
I make a broccoli cheddar soup in the vitamix, and if I use the recipe exact as written it is liquid, and savory. I do a baked potato soup as well, that is thicker, but some extra liquid would thin it out.
I have seen some of your other posts about this (the pizza price one a while back, so I got the basics of what is happening. This post was really long and I skimmed it, so if anything I suggested was covered as a no go I do apologize)
All the best to you.
unless by touch they mean slap
I noticed that, over time, my spice tolerance faded. It definitely took a hit when I quit smoking, but just moving to a country where there's less spicy food reduced it on its own. That may be something to build back up.
I may have lost some tolerance, but a bunch of reviews I read have people complaining about the level of spiciness compared to the claim. On the other hand, spicy is not something I get a lot of lately, so I am fine with it.
When it comes to drinks that are not sweet, I don't know whether it would be pleasant for you, but it reminded me of Ayran - have you ever tried it? It's a salty refreshing drink made of water, yogurth and salt. It's easy to prepare at home. I also just want to say hi, I often see your posts and comments around here and I appreciate your empathy and intelligence.
Thank you for the compliments. I have tried something that sounds like that before and didn't care for it, but I have been able to expand my amount of things to consume significantly by adding blended soups to my diet, something I just didn't consider before for some reason. The main issue is that the selection of premade American soups is pretty small, especially if you're a vegetarian. There are a lot of British options, but I don't really want to pay to have them shipped. I'm seeing what I can find that's already in the U.S., but that also means buying just one can or packet at a time to see if I like it before buying a cheaper, larger number.
Anyway, I'm working on things. Thanks!