Gastroparesis

The Invisible Pain

So, your family member or friend told you they have Gastroparesis...

     The first thing that probably came to mind was "Gastropa-whatsis?"  After all, if it was something serious or a big thing you are sure that you would have heard about it before... right?

     The truth is that Gastroparesis is a real condition, it is actually not un-common but it does not have the social awareness of other conditions and because of this very few know about it and even in the Health Care industry there are people who have never heard of it!  It might suprise you to know that there are more people diagnosed with Gastroparesis than there are people living in South Carolina!

     You look at your friend or family member and think "they do not look sick, they are just a picky eater" but not every disease manifests in an outward show like a rash or other recognisable sign that lets you know that there is something wrong.  You have probably heard them talk about having an upset stomach for a long time, maybe even years or decades and truthfully, you have learned to tune it out.  I mean, after all... it is just an upset stomach... right?

     Gastroparesis is a condition caused by damage to the vagus nerve the nerve that supplies nerve fibers to the throat, voice box, windpipe, lungs, heart, esophagus and the the intestinal tract as far as the transverse portion of the colon.  It can be caused by many different conditions such as Diabetes (the number one cause), Neurological disorders (such as MS and ALS), Anti-inflammitory conditions (such as Lupus or Scleroderma), treatment for cancer, use of opiate pain killers (in the case of chronic pain treatment) or can be Idiopathic meaning that no root cause is ever found.

     Because this is nerve damage you have to understand that unless it is caused by cancer treatment or pain killers the chances are that it will not 'get better'.  There are treatments that can be done to control the symptoms but there is no 'cure'.  Would you tell someone with MS "I am sure that you will get better soon"? 

Just what does this mean to my friend or family member?

     Chances are that your friend or family member with Gastroparesis is often uncomfortable or in pain because of the effects of the disease.  Their stomach does not empty normally meaning that food just sits there, making their stomach distend uncomfortably and often making them nauseous. 

     They have to be very careful about what they eat and how much they eat because their dietary needs are very different from the general public.  We all know that a healthy diet consists of fresh fruits and vegitables with fiber to aid digestion... but what if these were the very foods you could not digest?  Your friend or family member must avoid fresh fruits and vegitables because their stomach does not and cannot break down the fibers meaning that when the food is eventually passed into the small intestine it cannot be absorbed as nutrients into the blood stream.  Fibers can actually cause even bigger problems for them... such as bezors.  A bezor is a collection of undigested fibers that collect in the stomach or small intestine and can cause a blockage creating a medical emergancy.

     Even when they do eat processed easy to digest foods they may develope a condition where their small intestine (thanks to the nerve damage) thinks that there is an obstruction (called an Intestinal pseudoobstruction) meaning that the small intestine does not or cannot pass the food along.  This can aslo be a medical emergancy because of the stresses put on the intestinal walls.  This is a very painful condition and should never be taken lightly.

     This condition has a very big impact on daily life and can severely effect quality of life because we all have to eat to live and your friend or family member probably dreads the thought of eating because it often (if not always) means pain, nausea and discomfort that does not go away.  Imagine being afraid of every bite of food you eat, wondering if it will make you writhe in pain or if you will even be able to keep it down.

What things can I do to make things easier?

     Remember that this condition has no cure... so do not put pressure on your friend or family member by saying things like "when you get better" or "if you just calm down you will feel better" because to them that comes across as if you are blaming them for getting nerve damage.

     Yes, they are anxious and depressed... who wouldn't be when faced wit a thing like this?  Let them talk... let them express their fears and try to understand that they are not asking you to fix it, but to help them deal with the emotions involved as they try different treatments for the symptoms... the hope and the frustration.

     Remember that if you offer them food and they refuse they are not refusing your gift but are being careful and are often just not hungry... if the stomach never seems to empty then they never get 'hunger pangs'.  Don't feel bad if it is time to eat and they are there and you do not want to eat in front of them.  You can try having something they can eat on hand (simple carbs) or offer to make a smoothie so that they can be included at the table yet do not feel the pressure to join in on the meal.  Eating a meal together is a very social occasion and often people with Gastroparesis feel like they are left on the outside because they cannot join in the full experience, so having something that they can nibble on, eat or drink there can help them feel included.  Ask them what foods work for them because everyone is different.

     Help advocate for them... this condition is not rare but no one knows about it, so help spread the word... talk about it with your own friends and family.  Ask your own doctor about it and if they do not know about it (you would be suprised at how many doctors remember hearing the word in medical school but other than that know very little) then tell them about it.    

Facts and Myths

FACT

Gastroparesis is nerve damage

.The National Institute of Health estimates that over 5 million Americans have been diagnosed with Gastroparesis.

There is no cure.

It may take years or even decades to diagnose because many Doctors do not know what to look for or how to test for it. 

    

MYTH

It can be caused by anxiety or depression.

If it was really a problem more people would know about it.

All they have to do is not think about it and it will go away.

It is just a stomach ache.

-----Gastroparesis----- The Invisible Pain

Created October 7, 2009

The condition may be invisible, but you don't have to be.

Advocate for better research

Spread the word to family and Doctors.

Remember-- You have Gastroparesis but it does not have YOU!

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