This is Gastroparesis

Small white arrows on a blackboard.  A large yellow arrow the words 'This is...' written on it, pointing to ''Gastroparesis', and 'What they do to bodies and things that need to change' in blue.

#ThisIsGastroparesis


SAY 
Gas-trow-paa-REE-sis
SYMPTOMS
Early satiety - feeling full after little food. 
Nausea and vomiting - sometimes after any fluid or food is swallowed.
Abdominal pain / bloating / distention.
Vomiting undigested or partially digested food.

'Heartburn' / Acid Indigestion / GERD - when the lower Oesophageal sphincter, or ring of muscle, doesn't close properly, allowing stomach contents to rise up into the Oesophagus.  This is often a problem for pregnant women.

Constipation / Impaction - remember that diarrhoea can be part of constipation; the back-up behind the blockade, so to speak. 
FACTS
GP is associated with Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders.  These patients are more 
susceptible to internal tissue fragility, and so invasive (relative to a Bendy body) procedures such as endoscopies may replaced with a safer, if more costly, option such as the smart pill or capsule camera. 

In EDS/HSD patients, the Autonomic Nervous System as well as the structure of the connective making up the 
digestive system can contribute to Gastroparesis.  

EDS/HSDpatients often have other digestive issues, most commonly Dysmotilities of the Oesophagus and the 
tubes after the stomach, right down to the bottom.  Find out more in the first entry in The Tribe Diaries.

We were always planning on writing our “This is…’ series in-house, but the wonderful creator of the Gastroparesis: Fighting For Change action group and community, Melissa Adams Van Houten, had already written a piece so perfect, we didn’t feel we could do any better. 

So, we asked if we could collaborate, and weave our #ysuTribe member’s voices into the existing piece, using the email interviews we carried out earlier this summer, allowing us to say to you with confidence, ‘This is Gastroparesis’. 


Education is Key
August is national Gastroparesis Awareness Month and we encourage medical professionals, patient groups, and family and friends to help educate others about this life-altering chronic illness and its potentially devastating effects on patients and their loved ones.

As with many under-publicised and invisible illnesses, statistics on how many people suffer with Gastroparesis (GP) are varied, some would say sketchy.  This just illustrates the desperate need for more research and documenting of GP on a global scale.  

The National Institutes of Health (NIH – USA) estimates that more than 5 million people live with Gastroparesis. The most common known cause of this condition is Diabetes, which accounts for about one-third of the cases.  

Other causes of Gastroparesis include neurological disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders such as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (EDS/HSD), complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve.  

Most cases of Gastroparesis, however, are labelled “Idiopathic,” meaning that there is no known cause



Paralysis
Gastroparesis, or “paralysis of the stomach,” is a digestive motility disorder in which the stomach muscles fail to contract and move food from the stomach into the intestines at the proper rate.  
Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines. 

This process is slowed in those afflicted with GP, resulting in food being “stored” in the stomach for an abnormally long period of time.

This slowing of the stomach emptying process can cause debilitating and sometimes life-threatening symptoms, including stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety (feeling full after eating little) 

This slowing of the emptying process can cause 
debilitating and sometimes 
life-threatening symptoms.

and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, Oesophageal damage, blood sugar fluctuations, bezoars, and overwhelming fatigue.  



Diagnosis Can Be Murder
In the UK there's a saying.  When something is really hard to get through, we say 'It was murder', and getting a confirmed diagnosis of GP can be hard. 

Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material is mixed with food (usually scrambled egg or porridge/oatmeal) and then is traced over a two-four hour period by a scanner as it moves through the digestive tract.  The amount of food (if any) left in the stomach after certain time frames shows whether or not the stomach is working as it should. 

Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and (less commonly) the smart pill (which, when swallowed, transmits data regarding the rate of passage through the digestive tract).  

If you have Ehlers-Danlos Syndrome or an HSD, this smart pill or capsule camera is the safest and wisest form of investigation, as an endoscopy, for example, may tear, stretch, bruise or even rupture a fragile oesophagus – even in a Hypermobile patient, where it was previously stated that there were no inherent internal weaknesses.  

In the last decade or so, increasing amounts of information about Tenascin X (TNXB) and its involvement in EDS/HSD has seen somewhat of a shift in thinking, and it is now more accepted (if not widely accepted within the medical establishment – yet) that internal fragility and ruptures do and can happen in Hypermobile patients.  

It’s always best to err on the side of caution, so make sure to tell any and all medics who may be about to scope you about EDS/HSD and the risk or internal fragility, and you’ll probably find that most won’t want to do it, referring you instead for the safer (if more expensive) smart pill/capsule camera.
Similarly to EDS/HSD, getting a Gastroparesis diagnosis is not easy for everyone. Some of our interviewees said they had no trouble getting the correct investigations and diagnosis.  For others, though, like Tribe member Lisa Pelletier-Harman, this is not the case.  She was symptomatic for four years before finally finding out what was wrong. 

“Getting a confirmed diagnosis was very hard,” Lisa says.  “No one knew how the pieces fit together.  The symptoms can mimic others problems, so they have to be ruled out first.  I wasn’t hungry, I had unexplained weight loss, fatigue, bloating and pain upon eating, severe diarrhoea but also impacted constipation.”

“I vomited up everything I
ate, I was always nauseous. 
I withered in abdominal 
pain every day."
- Lisa    

And knowing matters, because if you don’t know what the problem is, you can’t fight it, and you can end up trying many medications, as Lisa did, and being put through “pretty much any test you can think of, as well as some I had never heard of,” as she puts it. 

For Kristyn Bell, another Tribe member, the situation was slightly different, even if her symptoms paralleled Lisa’s. 
“I vomited up everything I ate, I was always nauseous. I withered in abdominal pain every day and mostly wasted my days by trying to sleep because it hurt so bad. I went between constipation and diarrhoea constantly.”  

It took just eight months for Kristyn to receive her GP diagnosis and confusion arose when Irritable Bowel Syndrome became a contender as the cause of Kristyn’s ill-health.  Once again, as is usually the first stumbling block on the Invisible Illness journey, a lack of knowledge locally let her down. 

“Not many people around here seems to know what Gastroparesis really is. My symptoms were confusing because we were dealing with GP and IBS symptoms.  I went through many tests from testing for Celiac Disease, blood tests, tests on my gallbladder, EGD and colonoscopy…All from my Gastroenterologist.

I even saw a Urologist first and the ER thought it was my kidneys due to previous kidney issues.  Then after my abdominal MRI, my Urologist referred me to a Gastro doctor because my MRI looked good for my case and medical history.” 
Evie C, who also gave us a great interview, found it hard to get a diagnosis too, and once again her location and a lack of useful knowledge were to blame. 

“I had severe nausea, vomiting and I was full quickly after eating only small amounts.  Then there was the bloating, distention, abdominal pain and constipation.  I saw a local doctor who only knew the basics about Gastroparesis.”

You may think that it’s understandable for a doctor to not know about GP, but this ignorance is easily remedied by a quick search of PubMed, and there is enough information available to plug any holes until a specialist is found. 

“He told me that since 
I'm not a Diabetic, there 
was no way I could have Gastroparesis. He wouldn't even test to check!"
-Evie   

Unfortunately, as is often the case with EDS/HSD, doctors are not always willing to do what they should, leaving patients in a potentially life-threatening situation – which is what Evie’s doctor did. 

“He told me that since I'm not a Diabetic, there was no way I could have Gastroparesis. He wouldn't even do any testing to check! I ended up having to get a referral to a well-renowned Gastroenterologist in the Medical Center of Houston.”  

Was she pleased with the medical team there? 

“Yes.  I would recommend Dr. Eamonn Quigley, Chief of Gastroenterology at Houston Methodist Hospital.  In addition I would recommend Dr. Nabil Tariq for surgery related to GI issues, and he is also at Houston Methodist Hospital.”

Good to know for those in that part of the world…


Eat, Sleep, Pray…
Some people with GP can eat and drink. But their choices are often very limited and risky.  What might be okay to eat one day – or even one morning – may cause an almighty flare the next time, or that afternoon, leaving people with GP praying they’ll ‘get away with’ putting some nutrition and calories into their stomach.   Unfortunately, the ‘No-Go’ foods tend to be of the healthy kind, with fruit and vegetables often scoring poll position as Public Enemy #1.

Back to Lisa, “I can drink water and some smoothies that are made from scratch to control their contents.  I can eat a limited diet, low residue, no fibre, no fat, no seeds, no skins, being careful of enzymes as well. I stay away from ‘gassy’ enzymes.” 

So no cabbage or sprouts on her plate...

Guest writer and author, Kristin George, has a little more wriggle room than Lisa – one that might reassure any Spoonies out there who are doubting themselves and even considering themselves and their diagnosis as fraudulent. 

“At the moment I have a fairly normal diet because of transpyloric stenting,” a coated metallic stent that is placed using endoscopy across the three patients’ pyloric channels, holding them open and allowing the patients’ stomachs to empty normally.  “Before the stent, I had many times I could only drink Gatorade and Ensure,” a ‘nutritionally complete’ liquid feed containing up to eight grams of sugar per 100ml. 

I was also on a semi-soft diet several times,” Kristin continues. “I rarely could eat meat, never raw fruits or veggies, rarely cauliflower or broccoli (even cooked), rarely beans, and few fats and little fibre.  Before the stent I ate mostly carbs.  Some days, even ‘safe foods’ and liquids would cause severe symptoms.  I can now eat cooked veggies and fruits in smoothies, eggs, dairy (Greek yogurt, cheese, cream cheese), meat, ice cream, frozen yogurt low in fat, melons and all non-wheat carbs.  I still follow a very low fat and low fibre diet.” 


Tubies
Not everyone with GP can eat or drink, however, and some are forever dependent on one form of feeding tube or another. Gastroparesis knows no discrimination, and it attacks the young and old, even some babies and toddlers needing tubes for their survival. 

Nasogastric (NG) Tubes
These go up the nose, down the throat and into the stomach. They’re often temporary and are the type commonly used in young babies who need nutritional support.  These tubes can irritate the nose and cause ulceration.  They also tend to snag and get pulled about quite easily, so they’re not the most comfortable of fixtures.

Remember, Kristin has had 
to rely on being fed through 
a tube twice in her life – 
hope for some that 
brighter are ahead...

Nasoduodenal (ND) Tubes
These also go through the nose and down the throat.  But they extend past the stomach into the small intestine – the duodenum. They have to be placed in hospital, and generally last for one-six months.  People with these tubes tend to be hooked up to their liquid feed for 18-24 hours a day so the feed can be delivered very slowly. 

Nasojejunal (NJ) Tubes
The only real difference between the NJ and the ND tubes are that these go in to the small intestine, delivering nutrition to the jejunum.  The times are the same and the fluid must be administered very slowly.

Gastric or Gastrostomy (G) Tubes
These go through the skin directly into the stomach and are used for needs lasting longer than three months. Sometimes these also have a long tube (called a PEG) or a ‘button’ that sits flush with the skin.  This allows a ‘hole’ through which the feed can be administered. 

Gastrojejunal (GJ) or Transjejunal Tubes
This is where things start to get even more complicated. GJ-tubes go directly through the skin into the stomach too, but they have two ports. 

One into the stomach and one into the small intestine (for those who cannot have anything in their stomach). Again, feeding times are terribly slow, taking 18-24 hours. 

Jejunal (J) Tubes
J-tubes go through the skin straight into the small intestine.  Some types can be replaced at home, and again, the feeds are very long and very slow.  
You can find out more information about feeding tubes and so much more at feedingtubeawareness.org, an amazing online resource. 


When All Else Fails
Even these feeding tubes are not always enough, and some people with Gastroparesis end up with a complete failure of their digestive system.  This leaves them only one option for survival – putting the feed directly into the blood. 

Partial Parenteral Nutrition (PPN) doesn’t cover a person’s required daily nutrition and is given via IV (a needle called a cannula in to a vein) and is generally used in people who can still take thing orally.  In GP patients, it’s sometimes used during a flare to get fluids into a struggling body, but is not a common ongoing treatment used in the management of GP patients for various reasons. Some people with Ehlers-Danlos Syndrome/HSD may experience Pain Amplification, and this along with their tendency towards poor wound healing, makes this seemingly simple way of increasing fluid and nutritional intake more unpleasant than usual.

Total Parenteral Nutrition (TPN)
TPN delivers nutrition to heart via the blood stream.  People on TPN have permanent ports placed in their chests.  A Central Line, they are placed under the skin with one end of the line going into a large blood vessel above the heart, and the other coming to the surface of the skin at the port site where it is capped and the line often clipped closed. 

The liquid feed put through these lines is manufactured and produced in a completely sterile environment, with vitamin and mineral levels being closely monitored. patients and their carers have to be specifically trained on how to handle the equipment and administer the liquid feed before the hospital will let them go home.  This is high risk, and the possible side effects and dangers are many:
    - Around a staggering 50% of people with TPN will develop Sepsis (Blood Poisoning/Infection), which kills 
    thousands of people every year. Many will fight Sepsis repeatedly.

    - A loss of gastrointestinal structure and function (the digestive system is not used and certain enzymes and 
      chemicals are no longer produced by the body).

    - Liver Dysfunction occurs in around 90% of TPN patients.

    - Hyperglycemia (too much blood sugar) and Hypoglycemia (too little).

    - Volume overload leading to fast weight gain.

    - Gallbladder complications. 

    - Metabolic bone disease, or bone demineralization (Osteoporosis or Osteomalacia – something that people with EDS/HSD can ill afford, given that these condition are associated with a lower bone density from birth).


                As you can see, living with Gastroparesis can lead to some barbaric surgical procedures, with no certain hope of improvement - or even survival.  

                Melissa Adams Van Houten says it succinctly…

                As of now, there is no safe, reliable, and effective treatment for Gastroparesis – and there is no cure. 

                Available treatment options include often ineffective surgeries such as Gastric Electrical Stimulation (pacemakers) and pyloroplasty; medications which carry the risk of serious side effects such as Reglan 
                (which comes with a “Black Box” warning from the FDA) and Domperidone (which has not been FDA approved); feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief. 


                Living with Gastroparesis is challenging, both physically and mentally. It is truly a life-altering diagnosis. 

                We seek awareness, better treatments and, ultimately, a cure.



                You can join the closed Gastroparesis: Fighting For Change group by clicking here, and the open GPFFC Community by clicking here.  Don't forget to visit their website too to see the work this fantastic body is doing in the real world.



                You can read the original piece, and others, written by Melissa on Melissa's Blogspot
                Email media@youseeus.org for syndication permissions.
                A banner saying 'Have you been #CreamedForGP?, across the green #ysuSmiley, who's smiling and pointing at you.  banner links to facebook.com/gastroparesispiefacechallenge.
                An animated banner showing title images from and linking to #YouSeeUs' Gastroparesis Special In HEDS Up!.
                Share by: