I appear to be dying and don’t think i can stop it in time

#21

See an Anti-Aging and Regenerative Medicine Physician who has their GI fellowship module and has an interest in GI, or a Functional Medicine Physician with an interest in GI.
The tests ordered are outside of the knowledge of Gastroenterologists, and the approach is different.
Looking both at food sensitivities, altered gut permeability, microbiome, and markers of pancreatic activity/elastase/fecal fat/calciprotectin and a lot more would be a start.
Taking something such as Microbiome Labs DigestMate may be worth a try if you are unable to be reviewed by an expert who takes a different approach.
You can find A4M certified physicians in your area by going to https://www.a4m.com/find-a-doctor.html

A BMI of <14 is a life threat in the short term … see someone with an alternate approach. The standard approach seems to be failing, by your own report.

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#22

Without this diagnosis, everything else is throwing darts while blind folded.

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#23

If this is not a hoax, or a case of Munchausen’s, I’d get off the internet and call an an ambulance now.

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#24

@JuanDaw Am allergic to milk

#25

No its not a hoax or munchsusen!

Inam back from the doc visit. I brought two hoslital bafa with me but he did not admit me. Here is what he said

He said he as a gi doc does not handle the cachexia part of it and can not do TPN His job, he said, is tonrule out things like GI tumors He does not think its colon cancer. He offered scopes. He was willing to do them in hospital when i adked- but no nilutrition support before or after. I showed him what my body looked like. He loojed disguisted and said I know.

Oddly i liked him…

Here was a huge sticking point: he will not ackniwledge that dysbiosis from the infection a year ago is masking the usual signs of malabsorption (no fermenters means no gas no bloating no diarrhea). I was not too succesful at describing what happens when i increase the fat ir protein content.

We agreed on a stool test. I was wheeked in a eheelchair by an escort to the lab after a thorough search the lab said we no longer do the test so we do not gave the 24 hour stool test conteiber to give you (and wont do the test if i use my own container.

Cane home. Am so hungry- as usual. Ate. Does nothing….

Oh i said i will probably go to the ER. He said likely they will not give tpn there either because its not acute enough (weight loss started too long ago (tho who was ignoring the acceleration last 3 weeks) and that my bloid trsts at the end of may from another doc “looked good”. We didnt didcuss much thstbi had elevated liver enzymes for decades which suspiciously returned to normal.

I dont know if it was the right deccision to go -

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#26

@DrFraser Thanks. Probably too late. Put eggs in wrong basket.

#27

It is water kefir. Sugared water fermented by kefir bacteria.

Kombucha also has probiotic bacteria.

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#28

@JuanDaw @beth_kestell
I missed thatvwas justvsugar. Will look. I btw am very allergic to coconut abd cant even have mct
Sugar i can have tho. I tried kim chinand was too spicy for my gut. Inhaveva sampke of visbiiome in my fridhevbut havent tried yet. I need anarobes. And since everything intry seems to give a littke setback ive been spacing them
Tried maltodextrin yesterday- stomach upset since
And if I can recover from this visit, which was at a bad time for me and required tremendous amount of energy, maybe I can start thinking productively and gear up to try the next set of things right now it doesn’t feel like an option

#29

Our minds can get deranged when the body is breaking down, which is why it would be ideal if you had some person close to you be your advocate with the doctors / hospital systems / anything that you’re up against. Do you have family? Friends? Anyone who cares if you live or die? Have you let them know how badly you’re doing?

The hospital is your likely salvation. If the dr said they won’t admit / keep you because the deterioration was too gradual, well hell then, exaggerate how rapid the onset was, act confused and “hazy” with respect to that detail. If it’s obvious if you take your shirt off that you’re wasting away, take your shirt off, make sure they properly examine you. You need to be your own advocate and the first thing you need to convince the physicians of is that your life is actually in danger— NOT this or that about what you think is happening to you or why. Let THEM figure it out. One of my children was acutely sick when she was just two years old and she could have died if I hadn’t been there to advocate for her every step of the way, even though she was surrounded by supposedly top notch care in one of the best pediatric hospitals in the world. It took countless interventions, two surgeries, and 15 days before she was finally discharged. Today she is healthy and with a mind like a steel trap and you wouldn’t guess she was an inch away from death except for the surgery scars’ reminder. The system is soulless and often stupid, even if the individual physicians can be brilliant, and the system would have failed her in the absence of the advocacy of a mother like me. You need to self advocate or have someone else advocate for you.

Now this breastmilk business… you sound obsessed with it and maybe it is the answer to all your prayers, maybe it’s not. But guess what? They have it at the hospital. The labor and delivery wing has access to donor milk for babies who are having latching problems. Put yourself under proper care and they can write you a script for it once your condition is stable and they’ve moved from life support mode to experimental / troubleshooting mode.

If you reread what you’ve typed, you’ll probably agree that right now you’re not firing on all cylinders. It’s hard to fly the plane while building it so I’d say please get yourself someone you’re close to to help. I’m sure they’ll regret not knowing about it and doing something to help if the worst happens to you. But with or without that person check yourself to a good hospital as access to specialists is spotty everywhere and you could die waiting for your appointment. At good hospitals you have them all under one roof and with persistent advocacy, all their brains can work in your behalf.

Godspeed!

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#30

@Vida > Vida — I need to be blunt. This is now life-or-death.

You’ve described a catastrophic loss of body mass, ongoing malabsorption, mitochondrial dysfunction, and high ammonia levels. That’s not a slow decline — it’s a medical emergency.

You’re not in “problem-solving” mode anymore — you’re in survival mode. No protocol, no supplement, and no home intervention will help unless you first buy time.

Please go to the hospital immediately. Not tomorrow. Not after another forum reply. Today.

Use this message (read it, hand it over, or show them on your phone):

I have a BMI of 13.5 and I’m continuing to lose weight rapidly. I’m in a critical metabolic state — I can’t absorb fats or proteins properly, and my labs show high acylcarnitines and urinary ammonia, with possible mitochondrial and bile acid issues.

I need urgent hospital admission. Please escalate for:
• IV nutrition (TPN) — not oral feeding
• Review by a metabolic or genetic specialist — not just GI

My condition may not be visually obvious depending on what I’m wearing, but I am severely wasted. I’m willing to show physical evidence if needed.

This is life-threatening and I am running out of time. Please help.

You’ve fought incredibly hard. But now it’s time to let others carry you the next few steps.

Go now. That’s the move. Everything else comes after.
We all want you to make it through this — and you still can.

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#31

To summarise what @KiwiGuy says is right. Go to the hospital now. Use @KiwiGuy’s message.

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#32

Sorry about your situation. I’ve read through all the replies and don’t have much to add but wanted to suggest Meclizine for your stomach and overall strength. I while back I had an overall sense of being week and Meclizine made a big difference.
Good luck and go to emergency and do pretend you are worse than even you seem to be. i.e. exaggerate your symptoms such as when you stand up fall back into your chair and pretend you have hard time walking etc…

Good luck and stay strong. We are rooting and praying for you, and I know you are a fighter, and you will win.

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#33

He means Dramamine. But honestly just go to the hospital now.

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#34

Right now, you need IV nutritional support.

That said, you mentioned a scenario of difficulty absorbing macronutrients, mentioning the word “trifecta,” which I’m not really familiar with in the medical field… Apparently, it might not be cystic fibrosis since you didn’t mention excess mucus production… Pancreatic deficiency isn’t universal in cystic fibrosis… Even so, I would definitely try taking pancreatic enzymes about 10 minutes BEFORE eating. If you haven’t tried them yet, there’s nothing to lose and much to gain if your diagnosis is flawed.
Given the complexity of your current health and until you find adequate professional help, remember your inner physician. Sometimes, rationality gets in the way.
What foods your body is accepting or that make you salivate? Yes, we know how protein, certain fats, and this and that are always recommended, but, for example, a plain boiled potato with salt can have its value. I’m taking the liberty of saying this because I went through a health challenge that also caused me to lose A LOT of weight. It’s still a challenge for me today, but, comparing to what I experienced, I’m in heaven.
So, faced with my frustration with so many experts who repeated medical literature’s or alternative advices that failed to resolve the problem, I realized that my body accepted simple carbohydrates easily. I started there, humbly. It was a long journey, but I’m grateful I remembered my instincts. I continued listening to the doctors, but the final decision was based on how I felt - without fear (or prejudice.)
I sincerely wish you don’t give up on your quest.

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#35

Yes, hospital NOW

@medaura saying to lie if needed was spot on

@KiwiGuy, you preparing her a note to hand to them was brilliant and so caring it gave me chills. This should work, but if it does not, please read on for last resort advice…

And yes, as fisher1 said, walk in stumbling.

Go in wearing something that shows your ribs.

It’s time to pull out all the stops.

Others have already said all you need to know, but I realize you are feeling weak and helpless and not everyone has been raised to know how to get what they need, especially in a weakened state, so I’m just here to give you the inner dialogue to make it happen.

I don’t know where you live or who you know, but I am a born and bred east coast assertive woman who was not raised to always be polite, and I can tell you with 100% confidence you CAN get admitted to the hospital if you do not take no for an answer. You might have to do some uncomfortable things, but if needed, that is what you will do.

You do not leave there willingly. Just keep that in your head and fight for your life.

If an example gives you encouragement….my mom was on a gurney in the waiting room and they said they could not admit her and were waiting for a transport to another hospital. After hours went by, I YELLED time is up, and right in front of them, I made a call to a malpractice attorney…. Well, before I hung up that phone, they were pushing my mother into a room.

If you need to, do as @medura said and just lie. Heck, say your appendix is about to burst or you have intense chest pain, you say ANYTHING YOU NEED TO.

If you’ve tried everything and they are escorting you out… and I mean security is escorting you out… you do not leave on your own accord!!! But, if security starts to escort you out of the door and nothing else in your arsenal has worked, you stand there and scream on the top of your lungs I’m going to kill myself, and bam, you will no longer be kicked out. At that point, you might be admitted for a psychiatric evaluation, but it’s better than going home to die alone. If you feel you are dying, you do ANYTHING to make it not happen!!

I know it sounds crazy and intimidating and you were most likely not raised to do things like this, but know my sister was escorted out of the hospital by security on two different occasions, and all that happened was that it expedited the situation to the point of having a family meeting with the head of the hospital in order to have them increase the competence of care they were giving our mom.

I don’t know the ins and outs of being admitted and maybe someone here can chime in, but perhaps calling 911 and having them take you increases your odds, I don’t know.

For clarity, I am only talking about doing these things IF you are told no and if they ignore your note, and your only other alternative is to go home and to get weaker and weaker. Once you get too weak, you will no longer have the ability to advocate for yourself.

Try to get help in the traditional way first, but if all else fails, you do what you need to do to make the system work for you. Walk in and act as if you are a billionaire and you deserve the treatment that person would get… because you know that person would be admitted.

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#36

Everything @Beth said. Your job is to convince them that you’re dying and need help. It’s not to convince them of what test you need or that you need human milk. At first they will discount and dismiss everything you say vis a vis your own diagnosis and hopefully in the end they’ll learn to respect your intellect and engage with you. That was my experience but it took days and days of being in the hospital and getting to know the various specialists and them getting to know me. It doesn’t happen instantly. You’ll also think clearer once you’ve got some nutrition via IV and rested for a while. You’ve only got one job to do: convince them you’re close to dying and that it’s their responsibility to admit you and take care of you. It shouldn’t be that hard to pull off giving your clinical presentation. Just be assertive and don’t let them brush you off with bullshit. Say you’re dizzy, faint, have terrible aches, whatever it takes.

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#37

It takes a village, so I’m glad @medaura mentioned this.

To reiterate, do NOT mention what tests you think you should have, and no matter what, do NOT mention breast milk… if you do those things, they will absolutely discount you. Even if you are correct, mentioning those things will have them write you off.

Once you are admitted, at that point, feel free to talk to them about your diagnosis and what things might help you… But you go in and say I’ve quickly been deteriorating and I was told by health professionals I need iv nutrition to keep me alive while you figure things out.

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#38

IMO it’s not a good advice to lie in a hospital or pretend. And I don’t think any kind of manipulation is needed to be admitted if the situation is assessed as emergency.

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#40

Whether it is assessed as an emergency has very much to do with how the person presents himself. I wouldn’t lie for fun or even tell lies of clinical significance as they can delay or derail diagnosis but I don’t think there’s anything wrong with “fast forwarding” the presentation of symptoms one would get from starvation — extreme dizziness, light headedness, he can mention feeling nauseated. These are all things that can add color to tip the balance in the right direction. It’s also something he can do if he’s turned down the first time or at a different hospital. It’s part of self advocacy and far better to be alive with some white lie under the belt than dead and perfectly honorable about some punctilious point. If they already assess it as an emergency obviously no need to lie. The lying would be just to help them see a bigger truth that they might otherwise miss, and help them therefore assess it as an emergency.

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#41

One thing is self advocacy and another thing is pretending, especially in a hospital. I don’t think this forum would favor pretending. There are medical professionals among us, some work in hospitals. Wondering what’s their opinion re ppl who lie and pretend on admission. Any hospital would be able to assess the situation and decide what to do. If you misrepresent your situation it may delay the diagnoses and bring confusion. It will also ruin trust and you may not be taken seriously. They still would be able to get through it but time may be lost. I touched the subject not from ethical point of view as some may think but rather that it could be counterproductive.

Also, it’s a personal decision to go to a hospital or not.

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