Daniella’s Living WELL Story

There’s a common misconception that gastroparesis cannot or does not get better.  The fact is, it can and often does. I’ve received countless emails and messages from people who were diagnosed with gastroparesis, some of whom were VERY sick, whose experience has dramatically improved or even resolved.  I’ve decided to share some of these stories — exactly as written, with permission — to illustrate that it IS possible to truly live WELL after a GP diagnosis.

These stories are meant to illustrate the dynamic nature of a gastroparesis diagnosis. They are not meant as medical advice or a template for your own healing.  Each person’s journey toward living well and/or getting well is unique. However, having worked with hundreds of people with gastroparesis, there are certainly common themes and practices that you’ll notice again and again. 
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Daniela’s Story

I first experienced symptoms of gastroparesis in the summer of 2010. This was a particularly stressful year for me, with a demanding career, an active 3-year old daughter, and a faltering marriage. While going to a professional conference in New Orleans for a weekend, my body suddenly fell apart: I experienced violent nausea, vomiting, and a bewildering array of neurological symptoms. My arms and legs fell numb. I was shaking. I did not know what was happening to me, or how I was going to get back home to New York. In between my conference sessions, I visited two emergency clinics and received a bundle of medications that did not make me better. When I finally got home, I was relieved to be brought to a local hospital with my next round of symptoms. I was sure they would immediately figure out what’s wrong and make me better.

Little did I know that it would take months to get a diagnosis. Although the doctors never found a definite cause, I now believe that due to excessive stress in my life, my body succumbed to a virus that wreaked havoc on my body. My levels of stomach acid were likely depleted by chronic stress (hence my daily morning nausea and reflux symptoms in the preceding year that I paid no attention to) and became defenseless to an otherwise possibly harmless stomach bug. As I was being evaluated for neurological disorders (the doctors’ first guess was multiple sclerosis), the numbness in my arms and legs eventually subsided, yet the damage to my nerves became permanent and most pronounced in the dysregulation of the movement of my stomach. I now believe that the virus paralyzed my vagus nerve responsible for stomach motility. The on-and-off bouts of nausea were the worst that I had ever felt, including giving birth. I could not sleep. My insides were bloated and felt like they were filled with rocks. I felt dizzy and faint with my body wanting to vomit, yet there was no way to get relief.

Eventually, after a series of scans and wrong medications (including Zantac for reflux, which only further depleted my stomach acid), I received a GES that showed only 50% motility in my stomach and was diagnosed with gastroparesis. The bad news, of course, was that there was no cure. I was prescribed Reglan and told not to read about it on the Internet. That was a red flag. I immediately researched everything I could and decided never to take Reglan if I could help it. I was dismayed by the lack of information on GP, both at my specialist’s office and online. I did not know what to eat, so I tried to eat as little as possible. I finally turned to online forums. I sifted carefully through the information. I commiserated with others. I was terrified that this was going to be my life.

At that time, my bouts of violent nausea came and went in approximately 10-day cycles. When I was sick at night, the best thing was to log onto the Internet and try to find answers, because I was too sick and desperate (and tired!) to do anything else. I could not read books, my regular hobby. I did not enjoy being with my daughter the way I used to. I dreaded work. I did not want to talk to people – all I did was express my pain and desperation, making everyone very worried about me. Instead, I found profound comfort in reading and talking to other GP sufferers. They were my family now.

Being a researcher by occupation, it did not take me long to separate the wheat from the chaff in online postings. I followed up on every post that seemed to offer legitimate, medically sound information on cures and remedies of GP. I came across other researchers – a woman who worked in the pharma industry and who convinced me about the importance of supplementing the vitamins and minerals that my body was no longer absorbing, and especially those that could work on the reversal of nerve damage. I started taking B vitamins, magnesium, iron, Omega 3’s, in liquid form, if possible, to counterattack the breakdown of my body’s ability to absorb nutrients and to boost my nerve system. I understood that after the attack of a virus, gastroparesis (as well as other forms of nerve damage) may sometimes reverse itself if action is taken swiftly.

Also, at this time, I decided to start taking Domperidone after my doctor unofficially “approved” this choice over the FDA-sanctioned Reglan. Initially, my GP symptoms all but disappeared in the first 2 months of taking Domperidone. Later, they returned in a somewhat less debilitating form. Fortunately, when I was almost a full year into my illness I had my first visit with Dr. Mullin, the director of Integrative GI Nutrition Services at the Johns Hopkins Hospital in Baltimore, Maryland. Dr. Mullin diagnosed me with SIBO (small intestinal bacterial overgrowth) and I was treated with 3 rounds of antibiotics, while placed on a strict SIBO diet for the next few months after which I was declared SIBO-free.

The turnaround in my condition that finally happened a year into my illness was, in my opinion, a result of: 1) my continued used of Domperidone, to aid motility, and the many heavy-duty supplements that boosted the functions of my body; 2) the treatment of SIBO that had caused additional symptoms and malnutrition (my system was by then “gunked up” from the lack of typical digestive movement); 3) custom-made gluten-free and low-fiber diet; and 4) a regime of mental and physical exercise and healing.

Since the beginning of my illness, I spent about half a year in acupuncture treatments, and eventually switched to acupressure by an Ayurvedic nutritionist (who also taught me lots about the physical effects of stress). Yoga, especially twisting and turning of the abdominal area (bridges, cobra, etc.) often helped to kick-start my sluggish system. I also addressed my huge levels of anxiety. I finally started taking a low dose of Celexa, and going to therapy. My symptoms improved and there is no doubt that without anxiety, my body just functioned better. Because GP disrupts digestion, a body cannot make serotonin properly which leads to anxiety and depression. On top of that, dealing with a perplexing and painful medical condition leads to anxiety and depression. So, I decided to give myself a break although I was really reluctant to take yet another medication (I was by then on about 15 pills a day). The anxiety med supplied the depleted serotonin and made me worry less. It allowed me to concentrate more on making myself better and enjoying the good days rather than worry about how long they may last.

My journey with GP took a year and a half to resolve and I feel very lucky to be free of symptoms for the past 4 years. Although dr. Mullin is, as always, skeptical, I now believe that I am “cured”. In times of stress, I still experience GP symptoms and revert to an all-liquid diet and my trusted ginger, mint, and Nux Vomica for nausea, until symptoms resolve typically a day or two later. I plan to always continue with yoga and anxiety medication, ginger tea at night time, Omega 3’s, and heavy-duty vitamins, as I recognize their supporting effect on the body under stress. Recently, after my divorce, my life became more stress-free, and I try not to “rock the boat” too much. However, my house still got flooded, I threw out my back and had to go for surgery, and my daughter is approaching adolescence with all that it entails. In other words, life will always be unpredictable and panic looms just over the horizon. I feel more prepared to tackle it, though. As Crystal repeatedly points out on her excellent site and in her books (which I all purchased – I so wish I found her earlier in my journey!), success comes from an overhaul in lifestyle, and a well-managed regime of medication, nutrition, diet, lifestyle practice, and positivity.