Types Of Gastroparesis

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Looking up from inside a toilet at a dribbling man in a green t-shirt looking very nauseous  with his face on the seat.

#TypesOfGP

Gastroparesis can be caused by a few things, with Diabetes being arguably the most well-known, but GP can happen in any body.

Sometimes a seemingly innocuous or normal virus or infection can change a person's life forever, and leave them with a permanent problem and lifelong nightmare.  

"I suddenly became violently ill, with horrible belching, diarrhoea, and vomiting, until I passed out. One hour later, according to my husband, I was told that I had a rare bacterial infection in my intestines.
I want my family to 
understand what I go through, but they don't.
They sympathise,
but can't empathise.  
That is when the troubles started.  Now it is back full force and I lost 20 pounds in two months.  I feel like I have had a slow death sentence given to me. 

I want to feel good! I want to have some energy!  I want my family to understand what I go through, but they don't. They sympathise, but can't empathise. 

I guess I will be living on what amounts to baby-food-style puree for the rest of my life."

"I had a viral infection and was sick for a week.  After the sickness went away I had a stomach ache which led to vomiting; lots of vomiting. I threw up or gagged every 30 seconds for four months. 

Every 30 seconds!  I could not eat, sleep, watch TV, leave my house, or anything. I lived with my head in a bucket 24 hours a day, seven days a week for four long months. I hoped for death often.  

I was in and out of hospital, hooked up to IVs.  I really thought I was dying. 

Then I finally got the correct diagnosis of Gastroparesis.  The vomiting has calmed down but the bloating is such I can't fit into any clothes and have no money to buy a new wardrobe.  

I cannot work or play and have zero quality of life. Research says I might have this forever.  If that happens, suicide is a viable option for me as this is existing, not living."


I feel like I've had slow death sentence given 
to me.

I've lost everything
 because of this disease.  

I'm tired of it.  Tired of being mistreated by hospitals.
Others believe that stress and trauma, sometimes combined with bad dietary habits, is what led to them having Gastroparesis. 

A common complaint is that a surgical procedure, possibly being 
damaging to the Vagus nerve, is responsible for their stomach being paralysed. 

"I developed Gastroparesis after surgery for a hiatus hernia. In fact my stomach had herniated into my chest cavity. I suffer every single day and my life is awful. I wish I had never had the surgery. I just want my quality of life back for both me and my family's sake."
"I was diagnosed with gastroparesis about 3 years after they took out my gallbladder, and then a hysterectomy.    

When I get episodes, I’m hospitalised and get treated as a drug-seeker. Some doctors who won't treat my pain even though they know stopping cold turkey will cause withdrawals, and I suffer for days.

One time I even ended up in kidney failure."

Some people will never be able to say with 100% certainty what caused their Gastroparesis, and when medical teams cannot identify a specific cause, it is called 'Idiopathic Gastroparesis'.  The term idiopathic basically meaning 'no cause known' and is applied to many medical conditions - patients like and expect a label, even if it really means nothing in reality, in terms of being successfully treated.


Autonomics and 
Ehlers-Danlos/HSD
Some cases of GP can be traced to Dysautonomia, or dysfunction of the Autonomic Nervous System (the ANS). The ANS is responsible for many functions, including our Flight or Fight responses, our heartbeat, salivation, urination, pupil dilation and digestion to name but a few.  

Dysautonomia causes a lot of unpleasant and potentially life-limiting or even life-threatening complications, and people who have Gastroparesis because of this sort of neurological dysfunction may also suffer with other Digestive Dysmotilities in before and after the stomach. 

This, of course, leads to all sorts of other complications when it comes to using feeding tubes.  If the tubes after the stomach are not working or moving, then it may be the case that TPN (Total Parenteral Nutrition) is the only option.

We cannot look at this subject without specifically mentioning another group - those with Ehlers-Danlos and Hypermobility Spectrum Disorders (EDS/HSD), who are subject to a variety of causes within one body. 



Institutional Abuse
In recent years, we have seen an increasing number of cases where children and adults with Ehlers-Danlos or a Hypermobility Spectrum Disorder (EDS/HSD) have been misdiagnosed and accused of having Eating Disorders while medical teams ignore and dismiss their EDS/HSD diagnoses. 

Ironically, we have also recently seen an increase it the number of published medical papers on the subject of dysfunctional gastrointestinal issues in these connective tissue disorders.  In these circumstances, it is the medical attitudes surrounding the patients which causes the problems and leads to a delay in correct diagnosis and appropriate treatment and management of the patient’s health.  Indeed, in certain cases, permanent damage is done by this Institutional Abuse. 

EDS/HSD are so much more than being bendy or ‘double-jointed’, a mythical phrase that means nothing in reality. They are multi-systemic illnesses and effect the entire body and can cause or contribute towards Gastroparesis in two ways – directly and indirectly. 

Indirectly, Dysautonomia is associated with EDS/HSD and it seems that if you go into any online EDS/HSD support group, you’ll be hard pushed to find a person there without the EDS/HSD and Dysautonomia (POTS is a type of Dysautonomia). 

We covered above how this can cause GP.

Directly, EDS/HSD can cause Gastroparesis on a structural level. There is a lot of connective tissue in the digestive system, and even the stomach and actual plumbing may not be built properly on a cellular level. Remember, EDS/HSD bodies do not make collagen properly (some do not make TNXB, the stuff helping to hold the collagen proteins in place properly either), and our plumbing depends upon collagen for its strength.  

If the stomach, tubes and the tissues around the tubes, which should help them move, are faulty on a cellular level, then it increases the chances that they will, at some point in time, struggle to work properly. 

We said that when EDS/HSD and Gastroparesis hit the same body, they hit it hard.  Unfortunately, as you can now, we hope, appreciate, we were not exaggerating.  One last added complication and cruelty for these set of people, is that this faulty collagen/TNXB also means that many of them will have problems healing; wounds reopening after the stitches come out, stitches tearing fragile tissues, taking twice as long to heal…

And given that statistics say up to 50% of TPN patients will develop Sepsis, this poor wound healing makes things like feeding tubes and Hickman Lines and even bigger risk.  

People who do not heal properly can ill-afford to have their fragile skin cut at the best of times, and prolonged healing makes infections and Sepsis an even more real risk. 

Whether a person has EDS/HSD, Diabetes and Gastroparesis is beside the point. 

Gastroparesis is probably one of the most potentially deadly illnesses you’ve never heard of...

...and that has to change.

written by #ysuWords

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