New Section- Gastroparesis

[syralia]

Gastroparesis is estimated to effect 4% of the population (this estimate was made in 2004 at a meeting at the NIH in Bethesda Maryland) but the current thinking is that it is closer to 13% of the population and while not all cases are life altering the truth is that many are surviving wit the help of J-PEG, JG, NJ, NG and other feeding tubes or IV nutrition and some have had to have multiple organ transplants.

In one support community alone last year at least 5 people died as a result of either the disease process or the treatments (sepsis from IV nutrition lines, cardiac arrest, etc)

WWW.G-PACT.ORG is a legal non-profit in the USA that is striving to raise awareness and while I am not an official member of this org I am a supporter and advocate for Awareness.

Part of the problem is that people rarely hear about Gastroparesis until either they or a family member is diagnosed with it and many healthcare workers and Doctors have a very limited understanding of the condition.  They believe that only those with Diabetes can get it or that only those who are underweight have adverse effects from it... but as a Gastroparesis patient who is actually obese (the starvation effect comes into play when the body slows metabolism to try to stave off starvation and the fact that most of the foods tolerated are high carb highly processed foods do not help) and had a heart attack in October which is connected to this I can tell you that the understanding of this condition is woefully low.  Patients with it think it is very rare and suffer alone... when in truth many suffer in silence because they do not know where to go to ask questions.

[ILVHBK1]

MY 26 YEAR OLD SON DEVELOPED GASTROPARISES AFTER HAVING AN AUTO ISLET PANCREATIC TRANPLANT AT HOPKINS DUE TO CHRONIC PANCREATITIS. HIS VEGUS NERVE WAS DAMAGED DURING SURGERY AND THE PAST 18 MONTHS HAVE BEEN A NIGHTMARE.

[syralia]

I thought I would add a little of my story with Gastroparesis so that others can see why a section for Gastroparesis would be a helpful addition.

It took over 20 years for me to get a diagnosis...

I was told everything from 'it is all in your head', 'you are just picky', 'hypochondriac', 'we cannot find the reason for your ulcers or esophageal stricture' and more....

I was scared out of my mind as Dr's started searching for rare causes of the things going on-

Pheochromocytoma
Cushings
Scleroderma
Carcinoids
Ellis-Zollinger

The healthier I tried to eat the worse I felt... high fiber... salads, fresh fruits and veggies... things that are *supposed* to be good for you made me more and more miserable.

There came a point where I finally lost the ability to vomit... no matter how bad it gets it just will not happen... I will wretch and shudder but nothing will come up because those muscles are wasted but before that happened I would vomit things that I had eaten the day before still undigested.

I gave up... I had been tested and poked and prodded and was done...

I went to one last Dr under protest and he wanted to try one last test.

Yeah... right... another "normal, you are just nuts"

Nope...

The test was so very simple... not invasive... boring but simple.

On my birthday I went in for it... it was a Gastric Emptying Scan and all I had to do was fast for 18 hours (heck, I would go days without eating so this was a snap) then eat a small meal (normally it is a small amount of scrambled eggs with a radioactive tracer dye in it, but I am allergic to eggs so they put it in oatmeal for me) and lay on a table for 90 minutes as a special camera over me took an image every 10 seconds to measure how long it took the dye to leave my stomach.

It was a little un-nerving to have a nurse come in wearing a lead vest and holding tongs with a lead cup and cover on the end, hand me a spoon then pull a trigger which opened the cup revealing a small styrofoam cup with a little oatmeal in it and tell me to "eat that". (FYI- it is a very short acting dye that breaks down fast... no, I did not glow afterwards, lol)

I ate my oatmeal, laid down... felt crappy with that oat brick in my stomach... went home and was in a generally bad mood for my birthday because I had just wasted time on yet another test.

A week later I went back to the Dr... and got the shock of my life and a Diagnosis!  It *was* Gastroparesis!

Then I discovered that no Doctors in my area specialize in treating it... that few Doctors understand it... that there are few treatment options... that it is incurable and my best bet was to get online and start researching... so I did.

I discovered that all that "healthy eating" was the worst thing for me... no more fresh fruit or veggies or fiber... no fats... limited meats...

I drove over 400 miles to meet with a Specialist team to try to find what I could do and my options were very limited because I also have other health conditions (many vagus nerve related) and had developed multiple medication sensitivities making my options for treatment of the symptoms very limited.

I did more and more research, scouring the NIH (National Institute of Health) archives for articles and reports, found conflicting information all over the place... discovered that many doctors did not believe I had Gastroparesis because I am not 1-Diabetic or 2-Severely underweight even though I have marked malnutrition and a Gastric Emptying Scan proving a marked delay in emptying of my stomach.

There are *many* things that can cause Gastroparesis and with all the conflicting information out there is it no wonder that people who are diagnosed with it are often confused and feel so isolated and alone.

Some University websites claim that only 5000 Americans have it yet in 2004 in a meeting at the NIH it was stated that over 5 Million Americans have it to some degree.

The latest figures have it closer to 13 million... some estimates 4% of the population or 1 in every 25 people.  For the vast majority it is not something that impacts their life much but for some it is life altering and debilitating.

I personally know of friends who have died, people that I met online in support groups... people of all ages.  

I went 20 years undiagnosed... had I heard about Gastroparesis earlier I might have been able to benefit from some treatment options that could have vastly improved the health I have now.

There are Forums for much less common conditions... Gastroparesis Sufferers need a voice as well, we need to be able to get the word out to those suffering and to those who *might* have it and just need a simple test to check so that they are not left hurting and alone.