My name is Jonathan and I have lived with gastroparesis for 25 years. It is probably the most painful, uncomfortable disorder I have (and I have more than a few). In the past 15 years alone I have spent well over $9,000.00 in OTC and prescription drugs, changed my diet from a high fiber diet, to a low fiber diet, and back again several times. I walk over 10 miles a day, drink over 2 gallons of water a day, and I still find myself sleeping on the bathroom floor more than my bed. Constipation, bloating, indigestion, cramps, nausea, vomiting, and little to no food for days on end have become my life. In the past 3 months I have lost over 25lbs from not being able to eat. It is hard to add food to your system when you can’t get rid of the waste that is already there. Doctors, especially E.R. docs never seem to want to listen and always seem to give me prescriptions for things I have already tried multiple times with no relief. One of the main worries I have at this point is having to end up with a colostomy bag. It is an all-to-real reality that one day the muscles that work to extract waste from the colon will stop working all together. I am at my wits end with this disorder, and the doctor’s lack of knowledge about it. Literally after trying everything I could think of, spending weeks at a time in the hospital, and the lack of understanding from family, friends, and employers about this condition, I just want it to end. But I keep pushing on. I know that there is a solution out there and it starts by educating people both in and out of the medical field about Gastroparesis. With all that being said, the worst part about it is not having a strong support system. So, my message to anyone out there dealing with this disorder is simple: Do not give in to the despair. Do not let the pain conquer you. You are not alone, even though it may feel like it. Some day someone will find a solution. It may even be you. Modern medicine will fail you. People will not understand, nor have any sympathy for your struggles. But there are those of us out here who do understand. Who do sympathize. We are there with you. And you are never alone. Even though that may not take away the physical discomfort and pain, having a support system can help emotionally and mentally. I believe it is time we who suffer with this disorder come together and find our own way. God is with us. He will provide all we need as long as we do not loose faith in Him, or ourselves. Join me, or Dysautonomia.org and together we can raise awareness about Gastroparesis. Maybe, just maybe if several hundred or thousand of us yell it loud enough, someone will hear us. Someone will offer a solution we have yet to try. I know it is tough, but you are tougher. Together we can get through this. Together we can beat this. Together we are never alone. I love you all, even if we have never met. I know the strength buried within you. How you may ask? Because I have found it, and so can you. Let our stories spread like wildfire. Let our strength and determination be the guiding force. Let us be what each other needs. You got this.
About Gastroparesis
