Like any person newly diagnosed with a disease, back in 2010 I instantly headed to the computer looking for answers. What I was met with was a lot of clinical and sterilized papers written by the world of academia. I found them to be cold and written with no thought of the patient who might be seeking out, not only answers specific to what Gastroparesis is, but what life is going to be like living with it.
The article I WOULD like to have read would have gone something like this:
Gastroparesis, also known as delayed gastric emptying, is not an easy disease to live with. Every waking, and sometimes sleeping, moment the patient is going to feel the WORST kind of nausea they have felt in their entire life and it will never really and truly go away. Doctors will give them anti-nausea medications (zofran and phenergan), but their assistance is so short lived that the Gastroparetic patient often wonders why they were even given it in the first place.
The newly diagnosed patient needs to keep in mind that, though doctors have gone through extensive training, they're not the Fount of Knowledge. The patient will come to realize that doctors don't know everything, particularly when it comes to Gastroparesis, and they will encounter many frustrations when it comes to their physicians. Advocacy for themselves, research of the disease, and asking for second or third or fourth opinions will help in finding the Gastroparetic patient the help they need.
Most, but not all, Gastroparesis patients vomit everything or nearly-everything up that they eat. This causes the Gastroparetic individual to suffer from periods of dehydration, malnourishment, and exhaustion. The Gastroparesis sufferer also experiences early satiety, the feeling of fullness after just a few bites of food. They may go out to lunch or dinner with their friends and family and watch as they scarf down heaping piles of food as they push food around on their plate--or in a bowl--because they're already full three bites into the dish.
Unfortunately there's a great deal of pain associated with Gastroparesis. It often feels as though there's an elephant sitting squarely on the patient's belly and they can't get it to move. Then there's the frequent trapped gas bubbles that makes one feel as though they're having a heart attack. They need to rest assured that they are not, it's just gas stuck in their GI track.
Gastroparesis sufferers struggle a lot in their private lives because of the general nature of the illness. Friends and family do not understand what a Gastroparetic goes through on a daily basis just to survive, the unbearable fatigue that accompanies it, and the inevitable secondary disease(s)--it's sad, but true--that eventually pop up. The loss of friendships and family members is unavoidable in most circumstances and the patient feels left to fight this battle alone or to seek out others that are fighting the same one.
In the end, whether friendships are lost or gained, whether doctors understand or not, the Gastroparesis patient needs to learn to become their own best advocate. From this battle, the patient will learn that they are stronger then they ever thought and will find within themselves a warrior that they never knew that they possessed.
Being armed with information about what life with Gastroparesis will be like realistically would have been far more beneficial than clinical, textbook facts. Realizing that doctors aren't as knowledgeable about things as one thinks is one more weapon in a patient's arsenal. Preparedness in every manner possible will help someone navigate the tumultuous waters of Gastroparesis.
