The Tribe Diaries: What Goes In...

on a yellow rug, the shins and orange underwear of a woman with Dysmotilities sitting on the toilet.  The title of this #TDD entry 'What Goes In...' and the words '...Doesn't always come out.  In our first entry, Sarah Lettone talks EDS, Dysmotilities, Poo Babies and Assisted Delivery' written above  'The #ysuTribe Diaries'.

#TTDWhatGoesIn

If what goes up must come down, then what goes in must come out, right?  Well, at least where eating is concerned. But even with gravity exerting a constant influence on all our bodies, mine seems increasingly unwilling to let go of anything it digests, and I end up with a bulging belly full of wriggling, visible and somewhat painful Poo Babies. 

Pseudo Obstruction, Faecal Impaction call it what you want, Digestive Dysmotilities are way beyond common ole Constipation. “Oh, I get a bit bunged up too,” is a retort I commonly hear when some kind pair of ears has lent itself to listening to tales of my Toileting Troubles.  You’d be surprised how many strangers want to share their stories of times spent sweating on the porcelain throne.  It’s a great leveller, I suppose.  We all ‘go’, don’t we?  Well, sooner or later…

I used to be as regular as clockwork.  A good rectal evacuation was pretty much the only thing I looked forward to about having to get up, and I might even squeeze a bonus ‘quiet five’ in at the office after lunch if I’d had a 
triple-decker BLT and turkey, stuffing and cranberry.  Fast forward to the start of my Thirties, and that soon changed.  

I’ve got Ehlers-Danlos Syndrome and one of my bendiest bits are my ankles.  To cut a long and painful story short, one of them dislocated, I had a nasty fall, injured my pelvis and ended up in bed for a week. Before going to A&E. 

Why did I wait so long?  

Because what I feared would happen and was trying to avoid, happened.  What I said to the medical staff there was ignored and my EDS and resultant tissue fragility was dismissed. 
For the following eleven years, medical mistake after medical mistake was made, largely due to egos and unacceptable attitude - the usual kind of Institutional Abuse – which means that now, aged nearly 43, I am still sofa and housebound for 98% of my life, with long periods sometimes extending to hundreds of days seeing me stuck in bed and, despite more than a decade passing,

I have still not yet received appropriate care for my illnesses and injuries. All of this means four things:

Despite more than a 
decade passing, have 
still not yet received 
appropriate care for 
my illnesses and injuries.

- I was prescribed opiates to try to control my widespread intractable pain.  These have undoubtedly interfered with   my Digestive function.  They also mean that my pain has got worse.

- Long-term immobility has made my muscles waste and caused other sorts of deconditioning.  As I’ve aged, my  EDS has got worse as expected, but this has been exacerbated by my immobility and the lack of correct care.  Immobility affects Digestive function, making it slow down.  This deconditioning is also believed to make Dysautonomia worse.  I have Dysautonomia.  

- Dysatuonomia is dysfunction of the Autonomic Nervous System (ANS), which controls, among other things, 
digestion.

People with Ehlers-Danlos and Hypermobility Spectrum Disorders are more likely to have Dysautonomia, but also digestive issues due to the structure of the actual system.  We don’t make collagen properly, and our digestive system relies on collagen for its very structure.  If it’s not made properly, it’s not going to work properly.

Nowadays, I’m overjoyed if I have a Hands Free delivery any day of the week, let alone several in the same seven. 

It’s more usual for me to go weeks without anything leaving my body, and before it gets to that point, I have to stop eating altogether or risk ending up in hospital because my body has, according to A&E medics, started working backwards to push all the poo up through my stomach and out of my mouth.  

It’s as painful as it sounds, trust me, and all this just boils down to one thing; my Digestive system seems screwed…


Still A Lady
With or without painkillers, things don’t really change and I spend most of my life with the hopes of a ‘Poo Day’ in the shadowy recesses of my mind.  Weighing as little as I do right now, with Marfanoid limbs and a wingspan longer than I am tall making me look even skinnier, I end up looking heavily pregnant - and feeling like it too – when I am unable to poo.  

I used to think I was in the early stages of Gastroparesis, as did my specialist, but now I’m not convinced. My stomach certainly stops digesting episodically, and the evidence ends up in my sick bucket. I can vomit every sip of fluid and it can take up to eight hours for me to drink just one glass of squash or cup of tea. 

This makes taking meds and vitamins a nightmare.  Impossible some days.  Anyway, when you’re stomach feels like it’s being torn apart from the inside by shards of glass speeding along your tract, and you haven’t ‘had a movement’ in three weeks, painkillers are the last thing anybody’s body needs. 

I also think I’m a victim of Gastric Dumping, where the stomach lets everything through way too fast.  This is a whole new world of pain.  And some very strange sensations. 

All this considered, I’ve come to wonder if the problem doesn’t so much start in my tummy, as in the tummy troubles are being caused by blockages and a lack of motion in the tubes after my food back.  Think about it…

When your kitchen sink is blocked and you keep on rinsing bits of plates and washing the sludge down the plughole, sooner or later there’ going to be repercussions and most probably a messy backwash.

Keep rinsing bits of plates 
and washing the sludge 
down a blocked plughole, 
sooner or later there'll be repercussions
and most probably a 
messy backwash.

One the days when my system runs at super-speed, you can actually see my Poo Babies rising and rolling their way around and it truly feels the same as when I was carrying my son.  One the slo-mo days, the leaden lumps sit easy to see and feel though my stretchmarked, Stripey skin. 

I could tell you, exactly, the point where my Poor Babies leave the front of my body and pop through the tube towards their exit, just above my bellybutton.  Then another level of torture, and a white knuckle ride, begins.

But before we go into detail, remember that when it comes to medical matters and educating the masses, I don’t believe in TMI.  Also hold on to the fact that, as disgusting as what I’m about to divulge to you is, I am still a lady. 


Assisted Delivery
Amongst the right or nine (I forget) invisible illnesses I have, there are a number of nasties going on in my spine. Pretty much from top to bottom.  Pretty much all of them are caused by Ehlers-Danlos in one way or another.  Tarlov or Perineural Cysts (said to actually be aneurysms) is one of them.  I’ve got three huge buggers right at the base of my spine, the Sacrum.  Pun intended.

Their combined volume must be around 35-40cm3, which, in a frame as small as mine even at a healthy weight, is huge.  They made doctors’ jaws drop and a female professor stick needles in my anal sphincter.

Again, trust me when I tell you nobody needs or wants to hear the words ‘needle’, ‘sphincter’ and ‘your’ in the same sentence.

Once my Poo Babies come close to my sacrum, before they see light at the end of the tunnel, these spinal aneurysms on my Central Nervous System are compressed, squashed, and light up with a pain I can only liken to the 27 hours of Labour pains I had and dealt with with just Gas & Air (Entonox).  It’s feels exactly the same. 

It brings tears to my eyes, bile to my throat and a ringing in my ears that proceeds passing out.  I have to fight the urge to vomit, grip the edge of the sink as hard as I can while letting the rest of my body relax and breathe it out like an expectant mother waiting to meet her offspring.  

See some of Sarah's Poo Babies as they move around her abdomen in this video we posted not long after we first started asking Will #YouSeeUs  in 2016.

Spoons
Only what’s coming isn’t a little bald human chimp to be showered with love and cuddles. I’m lucky if, even after this bit, anything comes at all comes out unassisted.  It gives a whole new meaning to the word ‘Spoons’.

I’m not referring to those used to represent the energy levels of chronically ill and disabled people,  à la Christine Miserandino.  No, I’m talking the kind of cutlery that Elvis was allegedly accused of using to scoop his poo out of his hounddog behind. 

Ehlers-Danlos and Hypermobility Disorders are the genetic gifts that just.  Keep.  Giving, and on top of everything else, I think the skin inside my bottom is becoming a little bit baggy, not that it's hanging out, but I don't think it's making my Poo Babies' arrival any easier.

The needles-that-hath-no-name showed, apparently, that there is no neurological deficit in that region, and that the muscles are moving fine.  Hunky dory, thank you very much!

Only they’re not.  I know they’re not.  

Because my Poo Babies get all jammed up at the last hurdle and no amount of pushing or straining or cursing or praying makes them move downwards.  The only thing that does is digitizing. 

It’s not about phone numbers or new computerized art.  Not to put a too fine a point on it, it’s putting your fingers or thumb in to your vagina and / or anus in order to pick, pull, and pry the Poo Babies out. 

Yes, this is Assisted Delivery.

It’s like my digestive system sometimes just doesn’t recognize that it’s got another X inches of tunnel to navigate before my Poo Babies are successfully birthed. And opiates make no difference here. 

Indeed, the harder Poo Babies those medications make can actually be easier to assist out of my body because when these offspring are soft, any pressure applied to push them out only flattens them, and that then means mining away in my own backside and things getting extra messy.  Though it's the harder, pointy, stone-like ones that feel like glass in my tubes and leave me feeling bruised and uncomfortable too.  

After a Poo Day, although my abdominal symptoms may be alleviated (they may not), from the waist down I am swollen, often bleeding (usually from low in my gastrointestinal system, but occasionally from higher up as well), and I feel like the British Labour-voting public when another Conservative coalition government was voted in…


Ray Of Hope? 
I’ve been medicated for a while now, prescribed the usual drugs people on a digestively challenged path all generally seem to take.  And then move past because the drugs didn’t work and symptoms got worse.  What I was told to take worked for a while, but became increasingly ineffective very quickly, within just a few short months. 

Rather than up the dosage and start down that slippery slope, I decided, based upon my research and suspected diagnosis of Mast Cell Activation Disorder, to try and alternative supplement.  


So far, it seems to be working miracle, and out of the last two weeks, I’ve only had one Assisted Delivery, and pretty much every day I’ve been…Not quite like clockwork…But definitely mainly Hands Free.

But that is for my next #YouSeeUs Tribe Diary entry.

Written for #TTD by #ysuTribe member Sarah Letton. 
Email media@youseeus.org for syndication permissions.
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