Since being diagnosed with gastroparesis, my life has changed in unimaginable ways – and the medical community, which did not initially recognize my needs, left me ill-prepared for these changes. In February 2014, I was hospitalized with severe pain and vomiting, put through a battery of tests, diagnosed, and sent home with only a brief explanation of my illness. No one prepared me for the seriousness of this condition. Perhaps they thought I understood, but I did not.
I recall the doctors giving me an overview of gastroparesis. They told me it was “paralysis of the stomach” and impressed upon me that there was no cure. I remember them saying I would need to make some dietary changes, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects. I recall them telling me that in some severe cases, people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes. Mostly, though, I remember them saying that some would recover almost completely over time and would not experience long-term effects. Of course, this last statement is what I believed would be the case for me. After all, I was in good overall health. Not a big deal. I would follow their liquids-only diet, work my way up to soft foods and solids, just as they indicated I should, and I would be fine.
But it didn’t happen that way. I went home believing I would continue to improve; instead, my condition deteriorated. Within a couple of days, I started vomiting again and could barely keep down liquids. The attacks of pain worsened, and I became so weak that I honestly could not lift my head up. I told my family goodbye. I truly believed I would die. I had no idea what to do. I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications he had mentioned. He agreed, but because of FDA restrictions and requirements associated with my particular medication, it was two horrendous weeks before I could begin taking it. These were without a doubt the longest two weeks of my life.
Since starting the medication, I have stopped vomiting (for the most part) and can now function well enough to make it through the day, but I still cannot eat without pain. It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts, and it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back. I have experienced levels of fatigue I previously thought impossible, endured unfathomable pain, and come to realize the horrors of hunger and malnutrition. I had no idea I would face this. The doctors left me in the dark as to how to cope with my illness should it not resolve itself, as I had believed it would upon leaving the hospital.
I am thankful I now have a physician who is willing to listen to my concerns and partner with me in evaluating treatment options. He seems to genuinely care. But that is not the case for many in the gastroparesis community; they remain lost and confused, as I was immediately after diagnosis. They never find that competent, compassionate doctor. I hope that eventually we are able to establish a healthcare system that meets the needs of all. We need better care, better treatments, and a medical community that comprehends our needs.