You Have what did you call it Gastro something?

Don’t you just hate this question?  Even worse don’t you hate having to explain what Gastroparesis is all about?  Do you tell someone the simple answer my stomach is paralyzed?  Do you try to explain the symptoms?  Do you tell them to just imagine their worse flu and think about living like that every day?  Do you try to explain in detail what gastroparesis is and what how it makes you feel?

Well there is really no right way or wrong way to answer the question.  For some of us we are so tired of the question that we just give the simplest answer possible.  At the same time, we watch the person getting the answered shaking their head like they understand.  Then we thank to ourselves well at least I didn’t have to do a lot of explaining and that is over with.

Then there are some of us that are so angry about being asked all the time that we just lay it all out on the table.  Sometimes we go into so much detail that people are overwhelmed.  They stand there in awe just wondering how we are alive.  We must be extra strong.

Then there are some of us that vary our answer depending on who the person is.  A person that isn’t in our inner circle we might describe it as flu or just say I have a paralyzed stomach.  Then when we are talking to our inner circle we go into details to help them come to acceptance of what we really feel and how things are.  Then there are times that you want to spread awareness and you get blunt and to the point. 

Like I said there is no right way or wrong way to answer this question.  We are sick and we have an illness that most people have never heard of.  In most situations we are the first person that they have ever met with this beast we call Gastroparesis.  Think about it a second are you the first person that you know that have this monster.

The hardest part about explaining this disease is most people do not understand how their own bodies work.  All they know I get hungry I eat.  I feel the urge and I go to the bathroom.  Most people just think that is part of nature and there is nothing big happening when you are digesting your food.    I know there are times that I have the flu and have to watch what I eat.  I might run into bathroom issues of constipation or diarrhea but I take some medicine and I am back on my feet.  This is where the problem really starts.  Be honest did you know the importance of the movement of your stomach before you got sick with GP?

I have learned that most people are inquisitive because it is a shock to their system.  They can’t imagine that someone can’t just eat whatever they want.  They can’t understand that a person may be in pain when ingesting food.  That a simple few bites can mean a complete full stomach.  That eating can cause your stomach to bloat and make you look like your pregnant and you just took a few nibbles of food.

I also have learned that most people do not want all the details but they do want to be supportive.  Many are not trying to condemn us they just want the information so that they can treat us with respect and dignity.  With that in mind I have come up with my own way to talk about Gastroparesis.  In a way I am spreading awareness.  I am also sharing the fact that this is something that can strike without warning.  Also I am trying to debunk the notion that stomach problems are all in our head.

Get ready here is what I say….You might find that it is what you want to say…or you might just want to come up with your own answer.   The biggest thing that we need to remember though is most people do not understand how their body works so they can’t imagine how such an illness can exist.

I have Gastroparesis a physical illness that paralyzes my stomach.  See your stomach is supposed to contract to help food move throughout your digestive tract.  In fact, your entire digestive system is a long set of contracting organs.  When one part quits working and slows down or paralyzes it causes food to stop flowing throughout the rest of the system. 

I might not look sick because I am overweight but that is because my body has gone into starvation mode.  Many others lose weight and can’t even take a single bite of food by mouth.  I get sick and can’t eat a lot of food or the food you might be able to eat.  Your stomach is emptied totally within 4 hours and the rest of your system is going in full force by then.  For me it takes up to eight to twelve hours depending on what I eat for my stomach to empty.  Anyone can get this I consider myself one of the lucky ones because I am idiopathic or what you would say no reason to explain why my stomach decided to stop doing its job. 

Because my stomach doesn’t work right I live in a state of nausea.  I have pain in my stomach.  There are a lot of times that I get sick and loose the food that I have eaten hours later. There are no cure only treatments that help control, well what they control, of my symptoms.  I am lucky for right now that with my stomach pacer and medicines I am not hooked up to tubes. 

By the way I want to thank you for asking.  Hopefully I haven’t blown your mind with my explanation.  If you have any other questions go ahead and ask.  No question is too crazy for me to answer. 

True it floors many, but those that really are curious will just start asking me tons of questions.  I don’t just start the conversation unless someone asks.  If I notice that they are getting overwhelmed I turn down my explanation to a shorter version.  But most people that I have told this to are amazed.  Some even have said I have a friend or family member that might have this.  How can they be tested?  I also always have someone say that they will pray for me or wish me luck in getting better.

Again this might not be what you want to do.  Adapt it for yourself.  Amazingly this takes me about two minutes to share.  I have it well memorized.  I also have answers for most questions.  I share my blog address if they want more answers.  I also share G-Pacts address.  You don’t know how many people I have seen in other situations that remember this conversation and ask me how I am doing.   

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.