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