For anyone told they have Gastroparesis read this

For anyone told they have Gastroparesis, I feel it’s my duty to give my own experience so that should you have a similar experience you can avoid some of the time-wasting that I experienced and get help faster.

You may not have Gastroparesis.

Equally, if you are seriously sick and your symptoms are throwing up, intractable nausea and stomach pain, this may help you get a diagnosis.

In the days before the ‘gold-standard’ Gastroparesis test which is the Gastric-Emptying-Test (GET) doctors tended to rely upon an EGG of your stomach to measure your stomach waves/contractions. What an EGG does is tell the doctor how your stomach is performing not in terms of motility so much as spasms and waves.

Nowadays they talk more about motility and the bias is toward slow motility. This means when you go and get a Gastric-Emptying-Test (GET) they are biased toward thinking you have slowed down motility. Although women’s stomachs are much slower than men genetically, and although people are different in their emptying/rates of emptying, there is a bias toward thinking stomachs all empty the same way.

Because one size doesn’t fit all, it’s important to find out what your stomach is doing. It isn’t sufficient to be told ‘your stomach is emptying slowly’ as this is usually based upon a short test that doesn’t capture the duration of your stomach’s experience with food. The reason it’s important is because when you go into the ER with symptoms they will often only run a GET for ONE hour. They will tell you that if your stomach hasn’t emptied 50 percent it is emptying slowly. That isn’t true, a stomach can take up to 4 hours to empty and you also need to know if they are referring to the top portion of your stomach or are also taking into account your small intestine as that is part of the stomach in terms of function.

The best GET test is to ask for a full four-hour test, and for them to photograph your small intestine as well as your stomach. Only then can they definitively say that your stomach is slow emptying. If that is not done, question the diagnosis of delayed emptying. In this day and age of Diabetes, it is a common bias that people are more likely to have delayed emptying than fast emptying. (The reason the EGG is a less popular test is also because doctors cannot make as much money from that test as a GET).

Furthermore, it’s not as simple as ’emptying’ because the Cajal cells in your stomach are connected to your brain, they have 70 percent of the serotonin in your body. In a way, that ‘gut instinct’ is accurate, and as such, you ‘feel’ things via your stomach. If you are throwing up, feeling violently nauseous and dizzy and have severe IBS symptoms this can be from the mis-firing of your Cajal cells in your stomach, that are overreacting and telling your body not to digest or to over-fast digest your food. This often happens after exposure to a VIRUS.

Here’s the real problem. Typically the medications you will receive will be medications for moving your stomach (prokenetics) that have bad side-effects and will make you sicker if your stomach is moving too fast. If the biased assumption is your stomach is moving too slowly, (not emptying fast enough) then these prokenetics will speed your stomach up but if your stomach is moving too fast this will exacerbate your symptoms.

I saw three Gastroenterologists as well as some on call in the ER. The first Gastroenterologist ordered very expensive tests (Colonoscopy & Endoscopy) then accused me of being anorexic (I had lost over 20 pounds due to throwing up all the time 24/7) and said I had Candida. He prescribed heavy-duty antibiotics for a month, when I told him I would throw up the antibiotics he insulted me and said if men in Vietnam with their stomachs blown off, can swallow antibiotics I needed to.

I went to see a second Gastroenterologist having no faith in the first. She was better, she said about the Cajal cells and the mis-firing and believed it was caused by a virus. She gave me a 40% chance of getting better but said I needed to force myself to eat more and prescribed me prokenetics x 3 a day and anti-anxiety meds x 3 a day as treatment (you get very, very, very anxious when you feel this way because you are throwing up non-stop). I had taken prokenetics before in the ER and they did nothing or made me worse, I told her that but that was her treatment. I decided after reading about prokenetics and how they have irreversible side-effects that I would not be taking them x 3 a day as that was madness, likewise with the anti-anxiety medications as I knew how addictive they can be. At this time I had had a GET for one hour so did not have any proof of Gastroparesis or even slow-motility but this was assumed to be the case.

The third Gastroenterologist explained things differently.

He looked at my symptoms and said that I could not have Gastroparesis because you would not have daily diarrhea with Gastroparesis as literally your system shuts down. I didn’t have early satiety, (feeling full quickly) although I found it hard/impossible to eat because of the 24/7 nausea. I threw up but not all the time, and I didn’t feel worse after eating (but I didn’t necessarily feel better either). Based upon symptoms he ordered an EGG rather than subjecting me to more radiation and because he felt it gave a more accurate picture. The EGG was quick, safe and painless. The results showed I had fast gastric arrhythmia.

What gastric arrhythmia means is when the rhythm of your stomach which usually is in three waves, gets disrupted, and causes extreme symptoms like 24/7 horrific nausea and throwing up. If you have diarrhea that’s a really clear sign your system is ‘dumping’ IE going too fast, and you develop a host of issues including bacteria over-growth etc. This doctor said prokenetics would worsen gastric arrhythmia of any kind but especially if you are too fast. He prescribed a Tricyclic Antidepressant at a hugely lowered dose (typical dose 300mg, he gave me 10mg) as they work on smoothing the muscles in your stomach, which slow the spasms and in time, re-set your system.

It is worth noting, gastric arrhythmia is unique in that it tends to feel a lot like arrhythmia of the heart, as the stomach is not far from your heart. You cannot tell that you are not having heart arrhythmia, which is why I said I felt I was the first time I went to the ER. Typically you will have very bad anxiety which is caused by the feeling of constant arrhythmia coupled with nausea and all the other symptoms. This is not your mind it’s actually your stomach! Heart patients with severe arrhythmia often experience crippling anxiety due to how they feel physically, the same is true with gastric arrhythmia but it is less well known so often doctors will assume you are suffering from some type of anxiety disorder until the results come back.

My doctor told me 90 percent of his patients got over gastric arrhythmia. But the key is proper diagnosis. I read online about many people who had gone through months of suffering before being properly diagnosed. It doesn’t help that when you do searches, Gastroparesis comes up a lot and many times, with cases that are not true Gastroparesis. It is worthwhile noting that Gastroparesis really means a stomach that doesn’t move. If you are going to the toilet, if you are able to eat something every day, your stomach is moving.

People with true Gastroparesis get big balls of undigested food trapped and sometimes they throw them up or have to have surgery to remove them. People with true Gastroparesis can’t eat but a few bites of food without being full. Gastroparesis is considered incurable, which isn’t true as if it is caused by a virus it often will go with time, but you wouldn’t know that from searching even reputable places online (the Mayo Clinic and many others say it is incurable and you have to ‘manage symptoms’ and the only way you find things about it being curable is when you add ‘viral Gastroparesis’ then there are many articles about remission and cure).

If you have Gastroparesis you can be cured with time. But if you have some of these symptoms and not all of them it is quite possible you do not have Gastroparesis and your doctor(s) are being lazy by using Gastroparesis as an umbrella term. When you don’t know anything and you are sick and scared it is very easy to just follow what you are being told and get really bad and inaccurate care.

If I had known about gastric arrhythmia and/or the nuances behind gastric motility problems, and why they are caused, I would have had a lot more hope and targeted treatment from the start, I may even be better now. But instead I spent a ton of money and fretted and worried and was so sick for months, before I was even correctly diagnosed. Now I am taking the right meds and I am hoping that they will cure me but I also know I have spent many months in agony which could have been dealt with better.

To help others, I want to make this clear. There is bad information out there, much of it negative, when you are sick you can really lose your mind reading the conflicting and negative information out there, so I’m trying to put out some that will help anyone who is experiencing these things.

IF you get sick like I did and you experience extreme chronic debilitating nausea, if you are throwing up, if you have diarrhea or get really bad IBS symptoms out of the blue, first things first get checked for common viruses like Epstein Barr, Shingles and NORO. If you come back as having a virus OR you experienced viral symptoms prior to experiencing these symptoms, chances are a virus caused this. It basically kicks your body into overreacting and like an autoimmune disorder, you develop some type of motility issue in your stomach almost overnight.

This is very different from developing it because of an autonomic issue or post-surgery or if you have Diabetes. Even in those cases, sometimes it can be cured but there is more of a physical reason for why it happened and it is not usually as rapid onset. Knowing why it started is important.

Second, once you know this, if your symptoms are very severe it may be worthwhile having a Colonoscopy and Endoscopy because it can rule out other things with similar presentation. However, they are expensive so if you are not able to do this, or do not wish to, then ask for a four-hour gastric emptying test or an EGG to be performed. The latter may be harder to find as it is only found in selective Gastroenterology clinics whereas gastric emptying tests are done everywhere. Ideally if you can find someone who will do an EGG that’s going to give you more complete answers. You can google your city and gastric EGG.

Third, find a good Gastroenterologist. Google ‘good gastroenterologists’ or ‘stomach motility gastroenterologists’ in your city. How I found my good one was by finding that there was a Gastroenterology Research Center in my city and I asked to see the head of it. Even if they are not in your insurance you can request they be or you can pay out of network costs which are more but are usually partially covered by insurance. Call them and try to get an appointment ASAP if you say that you are throwing up and unable to keep food down they usually will take it seriously and see you quickly.

Fourth. When you go to see them take all your information with you and say that you suspect you may have a motility issue but you are not sure if it is too fast or too slow. If they ‘assume’ it’s slow, question that, and ensure your symptoms fit slow before accepting that diagnosis (if you have diarrhea it stands to reason your system isn’t slow!). Take someone with you who is a thinker, so that they can be your advocate. I have felt so sick I couldn’t think straight and having someone else there, helps when your brain turns to mush. Write everything down.

I pieced some of the puzzle together myself. I was proactive in finding a doctor I felt was decent. I tried even though I have been so sick at times I couldn’t even get up from all fours on the floor. Sometimes a doctor will have a piece of the puzzle like my second Gastroenterolgist, but they will still do something ass-backwards like prescribe prokenetic drugs (that cause your stomach to speed up) without thinking through whether this is logical and right.

The hardest part is many of the anti-nausea medications don’t actually help with the nausea, (I’ve yet to figure out why) but especially those with prokenetic properties if your stomach is too fast. In which your doctor should prescribe something that will slow it down but typical antispasmodics don’t treat the problem they just force your stomach to slow, so you want to ensure your doctor is considering a less invasive approach such as very, very low dose tricyclics. At that dose they have none of the harmful effects of tricyclic antidepressants and do not work as antidepressants but just help smooth the spasm and speed of your stomach. My doctor said it may take a while for them to work to reset your system, if I had known about them from the get-go I may be over this by now so as soon as you can, get on them.

I’ve been told I will heal. At times I find that impossible to believe this because I have been so sick for so long it seems like a cruel dream to imagine being well. But I hold onto hope because it’s what I have. And I feel lucky to have it. If someone had told me what I am writing here, I would have avoided a lot of pain and suffering. So I’m passing this on in the hope that even if one person is saved some of the suffering of bad diagnosis and bad medicine, it’s worth it.

If you have anyone you know going through something like this, show them this and if I can help them I will. It’s been the worst thing I have ever experienced and you do think you are losing your mind after months and months of it, but with the RIGHT treatment there is hope and we must hold onto that.

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Papier-mache

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They said, keep the blinds drawn, what we have to say, isn’t good

they lay her down on a white sheet and beneath, the hammered metal hummed

the bulb in the middle of the room, behind linoleum, sung a hissing song

their white-coated pluck and scratch, indifferent and sterile, she was just, flesh and blood

another in a long line of patients who, largely were forgotten, consumed by a machine, uncaring of individual

she could feel the dried corners of her eyes crack, as she looked left and right

someone once told her, adult survivors of abuse, find it hard to relax

they are always looking for what is crawling out of cupboards

she didn’t want her past to run her future, but now it seemed, her future was in doubt

never before had she felt so alone

the petty bravery of moving countries, seemed a facile thing, for children who didn’t yet know, true terror

surely it is easy to be brave when you have no war, and are just posting letters

she lived like that for so long, running from childhood’s sadness, enjoying the wide open space of adulthood

thinking she had all the time in the world, surely growing older was for another life

it wasn’t entirely selfish, she did her part, but there was always the tendency to want to make up for the past, by living without a care

and then it was no longer that way

impossible to ignore, unable to let go of, she was swiftly consumed and irrevocably changed

even if tomorrow the cloud lifted, she would never walk as lightly as she used to

the power of naivety, ignorance is surely, our dearest friend

now her heart beat fast all the time, unable to still, the surge of emotions inside

she was a rabbit in her burrow, smelling fox

she was no longer the quick silver of a girl, without terrible knowledge

days were unbearably long, and serious, like the frown on an old man’s face

they spoke of compromise, a series of steps, faltering and bursting apart and trying over

it was as if all of her was removed and pummelled into earth and made to rise again

never was it more silent, never did she wish for the phone to ring and something to let her out of the nasty trap with jagged mouth

words are just words, she could have said; I am strong, I am going to fight, but in the next breath she may

simply not be able

and that lack of, that inability, like a prison, or a sudden dismemberment, was, a kind of horror she’d never been creative enough to imagine

like being stolen from yourself, and hearing in the distance, the sound of children dancing

to your favorite song

if life is indeed a battle, she thought, this is where I need to buckle down

put aside my tendency to want to climb out of the window and skip the lesson

stifle the longing to run fast, in the opposite direction

everything so far, had brought her to this point, it wasn’t what she’d imagined

instead, she’d hoped by now, she’d have found her groove, begun as humans tend, to build her fortress

it wasn’t time yet, it wasn’t nearly time yet

and all the days she’d squandered, thinking there would be more

all the long drawn out machinations, to position herself and be ‘responsible’

denying the lustre of living

she’d put off joy so many times, in favor of ‘sensible choices’

where were those now? She berated herself for not having taken

more vacation, more experiences, that glass of wine, danced on that table top

she worked for a future, she may never get to experience, sure she felt bitter, angry at her lack of insight

though most believe, we’re never ready for bad news or, the fall of favor

we think we predict worst case scenario but that’s only an anxious mind

seeking to control the uncontrollable and unknown

nothing prepares you for a premature curtain fall

nothing shores you up to deal with catastrophe

we muddle through or we give up

those are the only two ways we journey

when the wet-ass hour comes tolling

she felt a grief for her bad choices and wished, like others she could have no regrets

it is hard not to regret when you’re cut off from everything

difficult to look forward when the present is biting at your ankles

she wasn’t one to pray for herself

but she did now

she prayed for the strength she felt she didn’t have

she prayed not to feel so isolated

cried thinking of how many before her, went through this darkness alone, their hearts aching to be cared for

she was a little girl again, looking for her mother beneath furniture

seeing her in album covers and from the top of buses

that woman had her mother’s eyes, large and dark

that lady’s figure is slim and reedy like her mother’s was

at night she wanted to feel the way she imagined a child does

put to bed and told, everything is well, you are safe

if she’d had children, she’d be saying it to them now

but life threw her a curve-ball and she ended up reproducing only

empty rooms collecting dust

perhaps it was for the best, now that she’d sunk so low

for how could she care for anyone, when she could not for herself?

if everything has a reason, she wasn’t sure of this

to teach her gratitude? To punish her for lassitude?

if there was a God she hoped, somehow to end her suffering, even by means of eternal sleep

but she felt bad for praying when so many, suffered far worse than her, and how they coped, she did not know

only that she had to try each day to keep going, in what direction was unclear

she wasn’t sure of the sign-posts or meaning, it was too easy to let fear, guide her way

so many things needed to change and yet, she was tired, so tired of fighting and being scared

they say those brought up unkindly, learn to be strong

she didn’t feel strong at all, she felt like only a thin wind, kept her from collapsing

and all her plans were thrown in water, watching the ink bleed out, with nothing left to find, but papier-mache

her grandmother once told her, out of nothing you can build, entire universes

she tried now to imagine a place, where she would be restored

where all the things she still had to do, remained possible

surely you can tell when, the end of the record is over and, it’s about to go quiet

she hadn’t been able to, she’d one day been carrying her dancing shoes, across the newly waxed floor, her eyes feverish with anticipation

and the next, swallowed by sickness, left without curative

only the static of a cold room and a script for patience

she’d been spat out of the system, left to flounder by road-side

how different, she thought, from childhood where, we do everything to protect them from fear

sewing toys that will keep them company at night

mobiles to send them to sleep, songs to ward away nightmares

and at some eventual point, we decide they’re ready for the real world

full of savagery and disregard and people who are supposed to help

but are only doing the bare minimum

is it any wonder we flounder, and miss a step?

looking around in wide-eyed fear

mouthing the unasked question

is this what it feels like, to be real?

It is in horror, we see truth

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Before

is a color I cannot describe

a place I don’t fit into anymore.

 

Even if I am restored

things will be changed for good

for most of us there are times

that shape our marrow

could be in the form of torment

maybe sorrow, sometimes joy

often the hardest times leave deepest imprint

perhaps it shouldn’t be that way

we should rejoice our luck a little, usually too busy enjoying ourselves

to leave permanent mark or maybe, challenge speaks louder than mirth

it is easy to accept a good day like a hot bath

than deal with a bad and hollow foe

that’s when our quick is sharpened,the story of our lives written

on the tip-toe of endurance

and what if we do not want to endure?

too bad, shit happens, legs break, minds crack

we’re going to end up there at some point

better waterproof our leaking sides best we can

the ocean isn’t a forgiving mistress.

 

When I fell, my mouth filled with salt

even then I didn’t know how far torment, reached down

it was a well, beneath the sea

a second drowning

for those who long to be free above ground

shackles of the merciless kind

only then I wondered at the strength of others

enduring from such an early age whilst I

ran long in the garden, unawares, chasing butterflies without a care

thinking I knew real pain from a momentary hurt

I knew so little

just a moment ago and a life time apart.

 

I am a twin of my previous self

we stand on different sides of the same coin

I am submerged, she is still, basking in the glow of a harvest moon

sometimes I look over at her and feel such envy

anger for my lack of appreciation when I, was her

but you cannot lead a horse to water

you cannot teach a child what she must learn

getting stung on the principle, she discovers through pain

it wasn’t in my thoughts that I should be

the girl on the other side of the echo, pleading to return

I don’t know if I will be permitted

but should I ever, walk again without curse

it won’t be as the same person, but a mixture of two

once you’ve seen yourself and begged for mercy

everything alters and everything stays the same

it’s up to you to be mindful of what you learned in that maze of pain

I learned what we think of as hardship

is often just everyday life

what we believe is suffering

can be comfort compared to other lives

when we don’t think we can change

then we aren’t given a chance, we know we should have

it is in diminishment we find elucidation

it is in horror we see truth.

 

Let me back inside my life again

and I will not be the girl who, took the easy road

for she now knows, just how deep anguish can go

it is in the tangle of the briar

and the wormwood of old trees

whispering advice never heeded

by the youth who believe themselves free.

 

Before

is a color I cannot describe

a place I don’t fit into anymore

 

 

Wellness

I am aware of the acrid taste in my mouth

of months

rolled under yellowed paper and stuffed with dust

I am aware of the dusk and the dawn

as it begins and falls outside of my existence

for the confined are the ones, who most seek the light

held back by the devil on my back, digging his rusty spurs

I dream

of who I was before, and who I may again, become

Restrained in abayence, watching the spin of twitching world

was there a time yet? I did not sicken at the mention

of nutrition and sustainence?

or energy enough to power through, whatever ailed me

now the vampire drains me of enough, I can only watch

in flickering shadows, a dance of memories across my jaundice

so much has come and gone in this short time, where a day

feels eternal

where an hour of pain is like

a life time without

as if cruelty stretched it out

until you could hardly see

where it began and where it stopped

or maybe it did not

end and instead

drags out, again and again, as if set on repeat

wake up, sicken, do the same until all you see

is the specter of yourself, treading lost time

and the taunt of health, is always a little too far to reach

yet you must try girl

yet you must seek

wellness

Those fierce moments in between

The day will come

THE DAY WILL COME

when you fall and feel you cannot get up

and when that day comes and feels like it’s won

you will pull yourself

inch by inch, of broken spine

cry by cry, scream by scream

until you stand

TALL AGAIN

and when that day comes

you will think on this and know

belief is half the battle

faith the other part

there is no room for query or supposition

let not the terrors a place at the table

the pure hearted know

healing comes from the soul

I tell myself this

at 4am over the toilet bowl

exhausted before I have woken

I tell myself this

when panic grips my chest like a thunder bolt

and whispers in my ear, it’s been six months

I tell myself this

when the person I was, is not the person I have become

but a whisper of what was

BECAUSE

we have a choice in our fight

to take it, to face it, or to back down

and though I wanted to give up, though I tried to let go

I’m still carrying the smallest candle of hope

it is in the stains of your disaffection

the hideous recollection of your breakage

when you see through the ugliness that doesn’t quit

and pain needling you like it learned to knit

those fierce moments in between

they are yours

and the day will come

full and bright and brilliant

when you shall, reclaim yourself

Sound

The kitchen, the harth, the space, is unlit

Weak light, nothing stirring

She is as still, as a breathing creature, can be

Sound… is for the world, chasing beyond itself

Where girls like her, hold tight to bus rails, wind messing their hair

Where children cling to parents, shy in perpetual game

Where men stoop to kiss women, full cheeks upturned

Music and the chink of movement, gypsy motion

Color and the russle of long skirts, like painted fans

A sky as blue as country girls eyes

The haggle of time

A red river, carved by motion

She wore those days, like a red dress, loose limbed and free

Unknowing yet, bestial crush of illness

Jeering like envious stranger, swallowing thin air

She is as still as a breathing creature can be

Sound, is for the world, chasing beyond itself