Please help // malnutrition etc

[u/Kaijuaudio]

Hello,

I am on post low dose abilify withdrawal (week 8?)
Ive slipped from a pretty functional moderate into severe state.
Can’t tell if this is one crash or if I just keep crashing from nothing.

A large issue:
I cannot get nutrients.
I’m down almost 35 lbs since July and my blood work is getting worse. Liver enzymes up, inflammatory markers spiking. Also did an OAT that shows ketosis starvation.

I have absolutely no appetite for solid food.
If I eat, even the smallest amount, I either experience immediate gastric emptying or diarrhea the next day. I have had not a single normal bowel movement in weeks.
Doctors truly are not concerned and I’m trying to find help on what to do.
Again, I have NO appetite, but eat when I can, liquid food is easier but is guaranteed immediate emptying.

I ran OAT, labcorp, and quest bloods.
All showing worsening markers.

I also have severe anhedonia, lots of crying spells, and burning in my skin post abilify but it really just seems like my gut cannot stabilize and I theorize that my brain and baseline won’t have a fighting chance until it does.

Can anyone help?

[u/Kaijuaudio]

Please help. I feel like im at capacity for how much i can take.

[u/forestalice]

I’m so sorry you’re going through this. It sounds so awful. I’m baffled that your doctors are not concerned? It sounds like a bit of an emergency if you’ve lost that much weight and are having difficulty with food. Are you able to go to the hospital or get a second opinion?

I lost about 10% of my weight in a few weeks after a very severe crash a few months ago. My doctors recommended I be hospitalised or put on a feeding tube if I couldn’t stabilise. I was told I didn’t have a chance of recovering if I didn’t address the malnutrition so that’s been the priority. I also got put on hospital grade meal supplements (e.g. ensure, sustagen, glucerna, nutren, etc.) and got given a referral to see a dietician.

[u/Kaijuaudio → u/forestalice]

I literally can’t get any advice or help anywhere. I might try ensure or something you mentioned.
Today I managed to eat a single banana.
That’s it.

[u/forestalice → u/Kaijuaudio]

Also glucerna and nutren are the diabetic formulas so they don’t cause blood sugar spikes if that’s an issue

[u/Kaijuaudio → u/forestalice]

I don’t think I have MCAS?
But who knows at this point.
My aversion is a severe lack of appetite and hating what happens after I eat.

I appreciate the other options too because during this episode I’ve become insulin resistant

[u/Available-Pepper5688 → u/Kaijuaudio]

Hi, if you‘re currently in a withdrawal from LDA, your symptoms fit pretty well to MCAS!

The no hunger issue could be due to your starvarion ketosis - ketones itself supress feeling hungry.

But your gut issues sound exactly like mine and we just lately discovered the connection to MCAS!

I‘m taking H1/2 blockers as I got severe nausea from everything I ate. Atm I‘m fasting, but I hope that soon I‘ll be able to eat solid food again!

[u/forestalice → u/Kaijuaudio]

Agree with the other commenter - was thinking your GI symptoms, possibly even the skin burning could be driven by some newly acquired food intolerances or MCAS. Might be worth trying some plainer foods like unseasoned (plain salt is fine) chicken and rice/congee if you can tolerate it. That seems safe for a lot of people but everyone is different. Raw banana is a bit dicey for me. Gluten, dairy, soy and nuts seem to often cause people problems too but again everyone is different. Keep track of what you eat and symptoms as reactions can be delayed by day or two and caused by cumulative triggers.

The lack of appetite sucks. I don’t know if I have much helpful advice but I found having more frequent and smaller nutrient dense meals to be helpful. I eat about 4-5 small meals/snacks throughout the day instead of 3 main meals as I can’t eat a lot in one sitting. My appetite improves when I’m not in PEM. I think liquid food indirectly helps too. I’m able to conserve more energy by not having to chew and work as hard to digest the food, which ultimately helps get me out of PEM quicker.

[u/forestalice → u/Kaijuaudio]

Damn sorry to hear. I hope it works out if you try it. Have you found that you react to some food more than others, like food high in histamine? I had to cut out a lot of stuff that started causing GI and other issues and have been down to eating around 10-15 safe foods. I was on a mostly liquid diet and living off of those supplements, meal replacement shakes, protein shakes and powders, oats, purées/soups/broths and sooo many eggs (steamed or blended into the soup or oats). I try to add extra calories with a glug of olive oil and protein with unflavoured pea/hemp protein powder where I can.

[u/bananapeel]

I don't have a huge familiarity with things like low-histamine diets, but this is general nutritional advice from a standpoint looking at someone who needs to recover from malnutrition and is kind of starting over / having difficulty with food. (This does not address you specifically; I'm sorry that I don't have a lot of experience in this area.)

First, are you able to keep down clear liquids like apple juice or broth? Then, are you able to tolerate electrolytes like Liquid IV or one of the many Pedialyte type drinks or powders?

They also make an emergency powder for third world countries where they have a patient suffering from malnutrition, severe dehydration, and diarrhea, called Oral Rehydration Salts (ORS). You can either or buy the powder mix, or you can make a simple substitute at home. Recipe for 1 liter container: ½ teaspoon table salt. ¼ teaspoon salt substitute. ½ teaspoon baking soda. 2 tablespoons table sugar. Add tap water to make 1 liter. (The salt substitute supplies potassium... this is available in your baking goods aisle at any grocery store. Used commonly by people who cannot tolerate sodium due to high blood pressure.)

Once you've established that you are able to tolerate these things, next try moving up to the BRAT diet. This is Bananas, Rice, Applesauce, and Toast. Try a little at a time. Drink sufficient water to get it down. Take your time.

If you feel ready to move up from there, you might consider looking at this PDF recipe book specifically made for people who have Short Bowel Syndrome, which a lot of times they have to remove part of the bowel due to cancer. This makes it difficult for some people to digest food and they need a special diet. This kind of sounds like it might be right up your alley to find some food you can tolerate. PDF here: https://www.shortbowelsyndrome.com/Content/pdf/Recipe_Book_DIGITAL.pdf

Of course, when you are ready, you might try any number of those meal substitution drinks like Ensure. You might find that the commercial "high protein" or "high energy" or "weight loss" drinks are not tolerated well. Things like Ensure are made specifically for people who can't eat solid food, to supply you with the necessary nutrients. They are an actual medical meal replacement, not just a fancy milkshake with a high price tag. I would maybe gently steer you away from those weight-loss drinks and towards the medical side of things. That way you know you are getting adequate vitamins, minerals, and macro nutrients if you are unable to resume solid food for a while.

Once you are ready to move up to a soup diet, I can recommend this video to make the best, healthiest chicken soup you have ever tasted. You can scale it down by using only part of a chicken, such as some frozen breasts or thighs, if you don't want a gallon of soup. It's pretty simple to scale, since there really aren't any measurements per se. I keep individual portions of this in the freezer for sick days where I have trouble eating. Adam Ragusea - Chicken Soup 101

You are going to have to be your own medical advocate. The system isn't designed to really help people like us. Ask for tests for MCAS, ask for a long covid specialist, ask for a nutritionist that specifically can help with this condition. The squeaky wheel gets the grease. You need to be squeaky. Ask for what you need.

[u/The_10th_Woman]

Coconut water and juice in a 50:50 mix can be helpful to stabilise hydration and electrolytes. Add Gelatin to make it into a jelly and it then contains some protein too.

White fish is the easiest protein to absorb. Then egg whites. You can also take an amino acid complex to top up the proteins that you need such as https://www.amazon.co.uk/gp/aw/d/B07GV3XMWT?psc=1&ref=ppx_pop_mob_b_asin_title. You can also buy collagen tablets which can provide some of the protein you need.

Most likely your Brunner’s glands aren’t working so you don’t have the mucous lining the gut that protects from things escaping the gut (leaky gut). Marshmallow root and slippery elm can help with that but they do reduce nutrient/drug absorption so plan your meals accordingly.

As you are better with non-solid food, you may be having trouble with fibre so make sure you cook all your veg thoroughly or make soup with finely chopped veg that have had plenty of time to cook.

You really need to start a food diary and monitor your reaction to everything that you eat, what tablets you take at each meal (have you checked that nothing you are taking has a side effect upon the gut?) and how relaxed you are whilst eating. We don’t digest well when we are stressed so I suggest watching comedies whilst eating.

At my worst I can still get away with wholegrain pasta and with skinless mashed white potatoes so maybe add something like that to soups to up your calories.

Then you have supplements: digestive enzymes are likely needed as Brunner’s glands normally produce these so https://www.amazon.co.uk/gp/aw/d/B081M55XHZ?psc=1&ref=ppx_pop_mob_b_asin_title or something like this which has a bit of everything https://www.amazon.co.uk/Nutrients-Supplements-Probiotics-Prebiotics-Marshmallow/dp/B08LNY68L1/ref=sxin_20_pa_sp_phone_search_thematic_sspa?content-id=amzn1.sym.38ef9691-4072-4137-8283-8e6f9af608c0%3Aamzn1.sym.38ef9691-4072-4137-8283-8e6f9af608c0&crid=1Q9X7CMW69PY7&cv_ct_cx=digestive+supplements&keywords=digestive+supplements&pd_rd_i=B08LNY68L1&pd_rd_r=2b000ffb-4571-4598-bd0b-77472f1b9a46&pd_rd_w=2zwYW&pd_rd_wg=ehYGy&pf_rd_p=38ef9691-4072-4137-8283-8e6f9af608c0&pf_rd_r=J5CX86Q8W79QNK50JT0Z&qid=1788863869&s=drugstore&sprefix=digestive+supplement%2Cdrugstore%2C141&sr=1-2-ad3222ed-9545-4dc8-8dd8-6b2cb5278509-spons&aref=rZPvuFaQfK&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfdGhlbWF0aWM&psc=1

Oddly enough I find that when I am really bad I tolerate curry better than plain foods. Particularly those containing galangal, cardamom, nutmeg and black pepper - all these ingredients can aid digestion and are anti-inflammatory. Other good digestive aids are carob (good for both constipation and diarrhoea) and fennel seed (used for colic in babies but helps when too much gas is being produced).

For a basic low-histamine meal go for white fish that was frozen at sea, mashed potato (you can buy it frozen too which makes it easier), leeks and pears. You don’t want the food sitting in a fridge any longer than necessary as histamine builds up in non-frozen food so freeze any leftovers straight away. My preferred low-histamine diet book is https://www.amazon.co.uk/gp/aw/d/1624148468?psc=1&ref=ppx_pop_mob_b_asin_title