Thread by @AshleySWeitz

Here's the story of how my trauma put a literal hole in my abdomen.

I'm typing as I go; please forgive typos and/or wonky syntax. And try to forgive me if halfway through it I delete and/or disappear. This story, this experience are still pretty raw.

Also, let me go ahead & disclaim:

I am no one. I am an authority on nothing.

I don't have a license to practice anything but driving.

Please never construe anything I ever say as medical, legal, or other advice.

I'm telling a story.

I wouldn't listen to me if I were you.

Let's start with #ACEs.

Y'all familiar w/the Adverse Childhood Experiences (ACE) Study? Published in 1998 & the basis for hundreds more pubs, which point to childhood trauma's impact across lifespan: the higher your "dose" of childhood trauma, the worse later outcomes tend to be

... like poorer social, emotional, job/economic functioning—duh, right? If you're abused you don't function as "well."

But also: physical health effects.

Survivors' RISK of diabetes, cancers, autoimmune dz, ischemic heart dz, many others seem to skyrocket w/exposure to trauma

... including an average 20-yr reduction in lifespan for those of us who are survivors of a) more types of trauma (original #ACEs cover this) and/or b) higher doses of trauma.

It's fascinating, horrifying, triggering—please take care of yourself—data:

cdc.gov/ace

My ACE score is high.

My rape at 12 wasn't the only trauma.

But the rape: those of us with "ACE scores" (cdc.gov/ace) of 4+ are ~7x more likely to be raped. With an ACE score of 5+, we're 8.32x more likely to later experience sexual violence

ncbi.nlm.nih.gov/pmc/articles/P…

Some images for reference.

Some trauma happened.
Then I was raped.
Then some more trauma happened.
Then I ended up with a literal hole in my abdomen.

Do y'all know about toxic stress? It's where the fight, flight, freeze reflex is so chronically exposed to fear—literal danger—that it pretty much gives up.

—Positive stress: exams, giving a talk, getting a vaccination
Single dose of stress, then back to baseline, recovery

—Tolerable stress: death in family, a breakup, broken bone
Multiple, often overlapping doses, multiple stress responses, coming in waves—but ultimately, recovery

—Toxic stress: child abuse, domestic violence
Multiple, overlapping doses w/o time or room for recovery. Your body becomes so habituated to real fear that it kind of glitches out. Even if you have a positive stress event—an exam—your body has no idea whether or not it's in danger

Tangent: in the context of toxic stress, addiction makes almost too much sense

Think about the last time you had a dose of terror—almost hitting another car, for example. First, there's an overwhelming rush of adrenaline, then there's an emotional letdown.

It feels AWFUL.

So if you're constantly in that state—if you're a young person with a history of trauma, with no control over your environment, even normal emotions coming at you from all sides, why WOULDN'T you turn to ANYTHING—substances, food, people—that might provide even momentary relief?

It makes sense to me.

But substance use wasn't my path. And not through any merit of my own. I was just damn lucky.

Knowing my history, a former therapist used to tell me, frequently, "There is no good reason you're sober."

There were plenty. But she was kind of right, too.

In 2011, I'd been in therapy more-or-less full-time for about 2.5 years. I'd told my stories 14 different times in 14 different ways. New stuff was always coming up. I was making progress. Still, I had "somatic" complaints—undiagnosable, yet excruciating pain. Nausea, vomiting.

We've got to get you some closure, my therapist said.

What if we called the police, she said. Obviously, they won't do anything, but you'll be able to tell them what happened when you were 12.

Tell them. Tell someone.

Get closure.

Be heard, she said.

So I called the police.

Remember when I said, "Obviously, they won't do anything"?

That was a literary technique known as foreshadowing.

Narrator: Our heroine truly had no idea what she was in for.

This was 2011; long before #MeToo

Before "He Wrote it Down": lauraparrottperry.com/1473/

But I'll be damned: they wrote it down.
They paid attention.
They wanted to know more.

I was so very sorely unprepared.

What I thought would be a cleansing storytelling—a report on file, a bow to tie it all up into whatever healing was supposed to look like—wasn't.

A detective called from a real-live SVU.

Guess what the statute of limitations was in the state where it happened?

15 years

Guess when I called?

14 years, 8-ish months

The detective asked for written statements from medical providers.

They wrote letters.

He asked for medical records—all the years, all the pain written down on paper.

I signed releases.

He said he ended up with something like 5 boxes of records.

Stacks on stacks of my pain.

Stacks on stacks of what I'd gone through—the pain I'd experienced—while my rapist grew up and got on with his life.

While he enlisted in the Marine Corps?
While he became a cop?
While he joined the US Border Patrol?

I'd been in emergency rooms. Hospital beds. Paying the price.

The detective was nothing but respectful. Encouraging. Believing. Sincere.

But the damage was done.

I'd been disbelieved so many times before him and so mistreated, he could have arrested my rapist on the spot and it wouldn't have healed me.

And when I realized that, I broke.

I started vomiting. I couldn't stop.

I woke up every day with a fullness—literal pain, right about midline, just below my xiphoid process.

https://twitter.com/AshleySWeitz/status/1041161771405328385

As every single day wore on, I didn't feel stronger as I'd hoped—I felt weaker, yet somehow fuller. My middle felt like it carried the weight of every single day I'd existed, disbelieved.

I couldn't "tolerate volume." My stomach refused water. Food. Medication.

My gastroenterologist, attentive and kind, diagnosed gastroparesis—literally "stomach paralysis," but referring to the lack of motility in my GI tract.

She injected botox into my pylorus in an attempt to "freeze" it open. I had a few days' relief before I started vomiting again.

She ordered a nasogastrojejunal (NGJ) feeding tube. Inserted through my nose and guided past my stomach under fluoroscopy, it emptied into my small intestine.

It was humiliating. It was shameful. People stared. It felt like a badge of failure.

NGJ/NJ tubes are small. They have a much smaller circumference than NG tubes, like are sometimes used in babies to give breastmilk or formula. I've heard you can put purees through an NG tube. You can also often "bolus feed" an NG tube—give an entire meal's worth at a time.

You can't bolus an NJ. Do you know what bolusing an NJ causes?

Vomiting

You know what vomiting causes?

A plastic tube taped to your cheek but also hanging out of your mouth because you've vomited so hard it's come up

NJ tubes misplace themselves—coil back into the stomach.

I went through idk how many NJ tubes over two months.

I vomited them. They coiled. They clogged.

Medications were an hourlong ordeal. I pulverized tabs with a mortar & pestle, diluted in water.

Flush, slowly. Push slowly so as to not nauseate myself. Flush, slowly.

We'll place one surgically, my gastroenterologist said.

Fine, I said.

I was tired.

I was so tired.

Seven years ago last Friday, I met the surgeon in the OR.

A g-tube, he said.

No, I said. A GJ.

(A g-tube only goes into the stomach—the GJ bypasses the stomach, like the NJ)

No, he argued. A g-tube or nothing.

What? I asked—both confused and scared.

I'm not placing a GJ tube today, he said. You can have a g-tube or nothing.

But why would I go from NJ tubes to a g-tube?

Because, he said, "People in your demographic end up pulling them out anyway."

People in my demographic.

People in my demographic?

I signed the consent—he held it in front of my face throughout the entire exchange.

So I was sedated. The g-tube was placed.

I woke up immediately after in more pain than I've ever known. I was vomiting blood.

In recovery, I vomited more. More blood.

Normal, they said.

Babies have these placed all the time with no pain meds, they said.

Go home.

I took a cab home, vomiting blood into a basin.

That afternoon, I felt far more pain than my c-section; more pain than I've ever known.

If this is what healing feels like, I thought—I'd rather die.

I stumbled into the ER that night.

"Why didn't they give you pain meds?" the attending asked.

"Babies have it done without pain meds."

"You're not a baby," the attending said, and ordered morphine.

I need a break. I need to take care of me.

I'll finish because I want to finish.

I want to finish, but I also want to assure you: it never ended.

I feel it now—right about midline, just below my xiphoid process.

I'll be back after the corner to finish the story. I want to.

Thanks y'all, for the support & love. I'm ready to tell it.

Anniversaries are weird; the body knows one's coming long before you ever think to glance at a calendar.

My sweet friend @sambooklove texted Friday: Uh, don't think me impertinent—but are you near a trauma anniversary?

But I didn't get to tell her to slow her woo-woo roll, because it was right. That exact day—Sept 14—the day she said Hey, uh, you nearing an anniversary?

It was seven years to the day since the tube was placed.

The body remembers what the mind tries so desperately to forget.

So in 2011, the tube was placed.

It was horrendously painful.

It was a PEG—percutaneous (through skin) endoscopic (camera, instruments down throat) gastrostomy (stomach tube).

It went straight from the outside world into my stomach, held in place by two "bumpers."

But it ... didn't fix anything.

It made things worse.

Because remember, the problem wasn't that I couldn't swallow. It wasn't anything that could be "fixed" by accessing my stomach, alone.

So I had a tube into and hanging out of my abdomen. Clothing was difficult. And painful.

Idk how y'all feel about pics, so I'll put some via link in comments here.

I was preparing for my disability hearing; ~90% applicants are denied, then wait 2+ YEARS for a hearing to be *scheduled*. I collected assessments from all my providers.

This is what my GI wrote. Bless.

Patiently, gently, growing frustrated with the situation herself, my GI said you know what? I don't know why you're not better and I don't know why the surgeon didn't make it a GJ to begin with. But I don't really care why at this point. I'll convert it to a GJ.

Two months to the day later, she did.

And it was ... fine-ish.

Sure, it leaked gastric fluid and bile and formula all over me all the time and I had a seemingly permanent wet spot on ALL my shirts, but it worked.

It's just, I still had a tube hanging out of me. All the time.

But I knew how to Google.

And I knew that my neighbor, a toddler with a rare genetic disorder, had a "low-profile" g-tube "button."

And Google told me they made those for GJs.

So I advocated for myself, as I was learning to do—again, not by choice, necessity.

And in January 2012, I made an appointment with interventional radiology.

They don't make low-profile GJs, they said.

Yes they do, I said. And here's the model number.

They ordered the kit.

I was so excited.

Y'all, I had a tube hanging out of me.

Because trauma.

Placement: they pass a wire through the existing tract (formed by the larger hanging out tube), then pass this whole plastic thingy over it.

The flip open thingy sits flush against the skin. The round thing is a balloon filled with sterile water. It's the bumper.

The tip is weighted and radiographic—visible on imaging—so for guidance during placement and once everything is in place, the interventional radiologist confirms correct placement with about 2-4 mins of fluoroscopy.

This is foreshadowing, btw.

The tract was still fairly new and still very sensitive, so for the conversion to the low-profile button, I had sedation.

I woke up to the radiologist standing over me, drenched in sweat, swearing.

"It won't let me past," he muttered.

"Your pylorus is shut so tightly I can't get the wire through."

A wire, y'all. An actual, pokey wire.

Now imagine water. It didn't like water, either. Or food.

"No wonder you puke all the time," he said.

I liked him.

It was infuriating for the radiologist, ultimately painful for me, but I'm not gonna lie—it was validating af. Someone else saw, they experienced what I was going through. Every day. All day.

It was real.

He saw it. It was right there and it was real.

Because trauma.

Remember the foreshadowing? Placement is usually ~2-4 mins of fluoro?

During the conversion from PEG-J to low-profile GJ, I was exposed to 76 minutes of fluoroscopy.

Radiation.

76 minutes.

Seventy-six minutes of fluoro is ... it's a really damn long time.

Because ... trauma.

He did get through. When he was finished, I didn't have a tube hanging out of me anymore.

It felt fancy.

A tube inside me? A hole in my abdomen? That was my norm.

Because ... trauma.

When you get a cut, your body heals itself. It grows new skin.

Wanna know what a body tries to do when you surgically insert a tube?

It tries to heal itself.

It grows "granulation tissue."

Wanna know how you treat granulation tissue?

You have to burn it off.

You burn it off with silver nitrate.

Silver nitrate is caustic and corrosive. It sizzles when it touches tissue.

Know what I did every 2-4 weeks for the next three years?

I went to my doctor to have granulation tissue burned off of me.

It hurt. A lot.

Because ... trauma.

And after January 2012, guess what I did every 3 months for the next five years?

I went to interventional radiology to have a new tube placed.

Because they get gross. Or the balloon bursts. Or any number of other issues come up in between routine exchanges, and you go in again.

Here's the kicker:

I didn't even use the damn thing.

Slowly, I became more tolerant of volume in my stomach and I slowly, slowly returned to taking water, food, medication by mouth.

But the doctors said, idk, let's kept it there.

Because 76 min is too long to use fluoro again

Because ... trauma.

I got pregnant in 2013.

I had an exchange when I was ~13 weeks pregnant.

I was back in interventional radiology a week after I gave birth.

Why do you still have this? sometimes someone would ask.

76 minutes of fluoro to place it, I'd say.

Oh, they'd say.

Then let's keep it.

So I kept it.

It stayed.

It was there my entire pregnancy.

It was there as I nursed. I was far more embarrassed about the weird plastic tube hanging out of me than I'd ever think to be about exposing my breasts.

Every single one of my shirts had stains from gastric fluid.

And that's just kind of how life went along.

On 12/27/2016, my son and I were robbed in broad daylight of all his holiday gifts, our clothing, our luggage, my computer.

The thief wrought havoc everywhere.

I was stressed af. Some might even call traumatized.

I was traumatized.

In early Feb 2017, while I was still spending most of every single day trying to recover some semblance of normalcy, the anxiety (more acid?) and the friction (sitting all day?) and the stress (lower threshold) all combined and I developed an abscess at the ostomy site.

My PCP tried to aspirate it but only pulled back serous—clear—fluid. We later determined she was likely pulling the lidocaine she'd injected.

Because it got worse. A lot worse.

On a Mon, I went to court (btw I found my thief; you're welcome, police) to see my suspect arraigned

By the time the suspect was arraigned, I could hardly stand. I could hardly walk. I could hardly drive myself directly to interventional radiology. I was in a lot, a lot of pain.

The PA took me straight back.

It's infected as hell, he said. He showed me—it was infected as hell.

I don't like what I see on this ultrasound, he said.

I need to take biopsies, he said.

The lidocaine never took.

I was never numb.

He took punch core biopsies of infected, angry, inflamed tissue and I felt every single thing.

MOTHERFUCKER, I yelled.

YOU WERE SUPPOSED TO BE NUMB, he yelled.

SUPPOSED TO DOESN'T COUNT, I yelled.

He gave me antibiotics.

But they didn't work.

So he gave me more.

But they didn't work.

So his attending gave me just whatever else was left.

The biopsies were fine.

All this happened over several weeks. By the time I saw the attending, he asked, "Why do you keep the tube?"

Seventy-six minutes, I said.

Yikes, he said.

Yeah, I said. I figure I'll need it for whatever cancer that'll end up causing anyway.

He didn't laugh.

Neither did I.

I need to do an in I&D, he said.

Irrigation and debridement.

Yeah, I figured that was coming, I said.

I went full-on vagal during the I&D.

Wait, let's pause: do we still remember? All of this? Every single bit?

Is because I had the gall to report my rape.

And I was believed

A week later, when he repacked the abscess, the attending said hey, consider having the tube removed.

But 76 mins, I said.

Yeah but we have new tools. New methods. We could get it placed again if we needed to.

That was all I needed to hear.

Ok, so can you do it today? I said. Because I was way the hell over the tube.

Get some supplies—you'll need to dress it for about three days until it closes, he said.

I scheduled the removal for the next week.

This is foreshadowing.

The PA removed it. Dressed it with two 4x4 gauze pads.

They were soaked through by the time I was in the parking lot.

You heal more slowly, he said. It might not be three days, but give it a week. It'll close.

Narrator: we'd all soon find out just how wrong he was.

I mean, on one hand I was tubeless! Yay! Party time!

But on the other, I had a hole. Just, you know, a gaping hole in me.

A literal hole. From just everything in the world to the inside of my stomach.

Have you ever heard of a fistulated bovine?

Look it up.

That was me.

And ok, I thought, it might be fine. Really, it might be.

I did give it a week.

Then I called. I said listen, everything I drink and a lot of what I eat comes out of this gaping hole in my abdomen. And I don't want to be a bother or anything, but could that just ... not happen?

Come in and we'll suture it, they said.

I did.

Then the lidocaine didn't work. Again.

Y'all, I felt every single entry & exit of that needle. I felt the sutures. I felt everything.

I lay there, tears running down my hot face, shaking.

I'm so, so sorry, he said.

Over the next two months I was in interventional radiology all the time. For sutures, for wound glue, for sutures & wound glue.

All the time.

I have a connective tissue disorder. The sutures "swam" through my skin like a hot knife on butter.

I had a toddler at home. On my own.

The top level of skin would start to act like it'd close, but then I'd sneeze. Or I'd pick up my son. And whoosh—I was covered in gastric contents.

Do you know what's in your stomach?

Acid.

Do you know what happens to skin when it's exposed to acid?

It burns. A lot.

Deeply.

I was so burned, so raw, I began to see layers of fat.

We've got to get you in to wound care, they said.

We're not taking new patients, wound care said.

Must be nice, I said.

I'm on disability. I repeatedly spent the majority of an entire month's check on wound care supplies.

We'll refer you to plastics, radiology finally said. They'll be able to close it.

Plastics said: we're neither boarded nor willing to do full-thickness closures on anyone—but definitely not you.

I'll admit, this was fair: I have the connective tissue disorder—and hemophilia.

Plastics sent me to general surgery.

They said ok, so what we'll do is a lateral incision—I said wait wait wait, let me stop you right there w/a hearty fuck you sir, indeed.

I didn't really, but why would I have agreed to a lateral incision?

In the meantime, mind, I'm raising a 2- and then a 3-year-old. On my own.

He couldn't climb in and out of his crib.

He couldn't climb in and out of the car.

I was in constant, excruciating, unthinkable pain.

But I was still having to manage somehow.

While I had a literal hole in my abdomen, leaking acid and occasionally gushing gastric contents everywhere (really—it was gross) I:

Put down my 12 yo dog
Brought home a puppy (ill-advised)
Potty trained Tiny
Planned & hosted a symposium
Climbed mountains

And I gave talks about trauma, about the effects of ACEs, without managing to mention the most blatant but indirect effect I was experiencing in those very moments, while also hoping against hope that my dressing would hold and I wouldn't gush fluid everywhere at a lectern.

I count that Tiny was in the hospital for his own hemophilia ~six times while I had the actual, literal hole in my abdomen.

The problem with a stoma turned gastrocutaneous fistula is that the tract finally decides it's gonna be skin. It says, I'll stop growing this granulation tissue and I'll start growing skin there instead. It epithelializes.

Sutures were never going to work.

A lateral incision might have killed me.

Gastroenterology said they'd try.

And on Sept something-or-other, the 6th or 7th last year, nearly six years to the day after it was initially placed, the same damn surgeon who dared call me a demographic?

He closed the hole.

It's kind of a cool procedure if you don't think about the fact that I lost chunks of a decade of my life to this very visible, very painful reminder of ... my pain.

An endoscope deployed a "bear claw" clip and closes the fistula from inside.

ncbi.nlm.nih.gov/pmc/articles/P…

So now it's closed.

Y'all, I don't know.

I don't know how to tie this up for y'all.

The fact is I still have a huge scar. I a literal, visible reminder of all I'll never know I lost. I have no idea what I missed out on as a child, adolescent, young adult.

I simply don't know.

I was 30 years old when I sat bolt upright in therapy and said, "Wait. You mean to tell me there are people walking around out there who enjoyed childhood?"

I didn't know.

I really didn't.

I thought we were all in on some sick joke.

The thing is, the ACE Study is magnificent. It has limitations. It needs updating. But the basis for the scientific fact that childhood adversity limits adult potential? That's huge.

So what do we do with that knowledge?

I really don't know.

We could start by believing women.

The ACE Study PI, Dr. Vince Felitti, is my Justin Bieber. I kiss a poster of him every night.

He wrote the following:

"This is not a comfortable diagnostic formulation [child abuse as a contributor] because it points out that our attention is typically focused on tertiary consequences, far downstream. It reveals that the primary issues are well protected by social convention & taboo ...

... It points out that we physicians have limited ourselves to the smallest part of the problem, that. part where we are comfortable as mere prescribers of medication. Which diagnostic choice shall we make? Who shall make it? And, if not now, when?"

memoiretraumatique.org/assets/files/v…

When will we believe women?

When will we believe survivors?

The stats in Utah are 1 in 4 girls and 1 in 7 boys by age 18 will be victims of sex abuse.

Y'all, by the time I reported my rape, my body was already so habituated to toxic stress that it did only what it knew to do.

It survived.

But when we talk about survival as a choice? When we talk about strength as something anyone can put on or display?

What the fuck am I supposed to think?

What the fuck is Dr. Blasey supposed to think?

Anita Hill?

Your own child?

Being victimized is the absence of choice.

Survival isn't some grand, beautiful, glorious state.

It's a hole in my abdomen.

It's your aunt's borderline personality disorder.

It's your cousin's substance use disorder.

It's getting through the best you can with what you know.

I have no clue what I don't know, but I know I don't know a lot.

I say sometimes I'm still learning to become human.

But I know we don't fix a shameful discourse by perpetuating shame. By silencing survivors. By comparing.

Believe me—we know shame. We have enough.

My survival right now is in advocacy. It's in learning to take up space. It's in asking of myself, of y'all, of everyone re believing survivors, as Dr. Felitti said, even when it's inconvenient, even when it's uncomfortable, "If not now, when?"

Now.

The time to believe is now.

*Vertical incision. He wanted to flay me.

*Vertical incision

Context:

https://twitter.com/AshleySWeitz/status/1042163628084883456?s=19