The following is a guest blog post by Melissa Adams VanHouten. You can read more about her on her Gastroparesis: Fighting for Change website and her blog.
Since being diagnosed with gastroparesis, my life has changed in unimaginable ways – and the medical community, which did not initially recognize my complex 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.
My ordeal began in the ER with blood tests and scans. When these tests showed nothing of concern, the doctors forced a tube down my nose and pumped my stomach in preparation for an upper endoscopy. To this day, I have never experienced anything quite so unpleasant and terrifying. The doctors were kind and warned me that, though necessary, the procedure would be painful. They did their best to talk me through it, but it was not an experience I ever wish to relive. In addition to the endoscopy, I was sent for a Gastric Emptying Study (GES) the following day. This was not a particularly harsh test except for the fact that I was required to keep the food down despite my frequent vomiting episodes. My situation was not improved by the radiology technician warning me repeatedly and sternly that if I vomited, we would have to repeat the test. My week was rounded out with more scans, additional blood tests, and a few IV changes.
The good news is that, though the tests were difficult to endure, the nurses and doctors were (for the most part) kind and understanding. They controlled my pain well, answered my questions when they could, and took reasonable steps to ensure my comfort; however, my stay was not without issues. There were numerous occasions where I had to ask what medication I was being given and why, and there were a couple of medications that I concluded were unnecessary – such as the “standard treatment” for heartburn, which they assured me everyone who complained of stomach pain received, when I was not experiencing heartburn. I was also woken up by the blinding overbed light several times during the night, every night, for blood pressure checks and such when I really could have used the rest. I was discouraged from showering and walking the halls as well, as this seemed to be an inconvenience for the nurses. The biggest issue by far, though, was the coordination of care. I lost count of how many different medical providers I spoke to, could not understand their various roles in my care, and was required to repeat my “story” every time someone new arrived. I would have loved to have felt as if everyone working with me was “on the same page.”
Fortunately, at the end of my week’s stay, I did receive a diagnosis. I am thankful I was diagnosed so quickly, since many in my community spend weeks, months, or even years seeking answers. What is not quite so fortunate is that, upon my release, I was sent home with very little information regarding my condition and was told simply to follow up with a gastroenterologist in about 6 weeks. I had no detailed diet plan, no medications to try, and no idea what to expect.
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 a 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 did not 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 could not get in quickly to see my new gastroenterologist, and 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 the hospital doctors 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 did not impress on me that this was a serious, chronic illness, and they 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. Though there are few treatments available for gastroparesis, my doctor seems to genuinely care and refuses to give up on me. That means the world to a person in my circumstances. My experience differs from many in the gastroparesis community. Unlike me, they remain lost and confused, as I was immediately after diagnosis. They never find that competent, compassionate doctor. These are the people for whom I advocate. 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.
This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Melissa for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.