In February 2010 I developed what I assumed was a stomach virus, but after a week it of it not going away I went to my doctor.
I was extremely fortunate that my primary care physician also had a highly skilled gastroenterologist on her staff, Dr Christopher Demitrou. Dr Chris examined me and sight on seen diagnosed me with gastroparesis. That was the first time I ever heard that word. That was then followed by being told that there is no cure…
I was initially prescribed Reglan to help with my stomach motility.
I missed a a few weeks of work trying to stabilize myself. When I returned having lost 25 pounds (I’m 6’4” and my standard weight was 170 before this) I was written up by my job for the missed time and accused of faking an illness. Shortly after returning I started having adverse effects of the Reglan and had to immediately come off of it. Now that I was off the medication, Dr Chris moved forward with the gastric emptying test to confirm the disease. Thankfully I got to eat cereal because most tests are eggs and I don’t eat eggs lol. The test confirmed I had a severe case of gastroparesis. I was then prescribed Domperidone which I’m still on to this day (as needed) and need to get it from Canada.
My manager at the time, Ellen suggested Acupuncture to me, and willing to try anything I went for it. She introduced me to Dr Bin Xu of the NY College of Traditional Chinese Medicine, and that Dr I feel saved my life. He researched my illness and started treatment and I started feeling results and began to stabilize.
In the meantime, my illness destroyed all other aspects of my life. I toughed it out at work each day and had no energy to do much more. My girlfriend at the time broke up with me and moved out, and my friendships with most people dissolved because I wasn’t up to socialize.
Between 2012 – 2014 I was mostly in control of my condition, but those years were not symptom or suffering free; and then I had my first significant relapse in 2014. This was also the first time I would need to go to the emergency room for treatment. Being 6’4 and under 160 pounds makes people look at you differently. I was accused of medication seeking (I wasn’t nor asked for any medication) when I just wanted an IV and my vitals checked. The doctor never heard of gastroparesis, was dismissive and said, “so you have a tummy ache?” It was humiliating and I’ve never been back to the ER for any type of treatment since that day. I would rather suffer at home than made to feel the way I was that day.
2015 was kind of a rebound year for me and I was able to maintain mostly stability but still of course had my moments but was able to maintain control through 2016.
2017 I suffer my 2nd major relapse and was feeling so sick that July, that I almost didn’t go to my 2nd row seats to see my all-time favorite band, Guns N Roses, thankfully my amazing girlfriend convinced me to go and took care of me the entire show.
I left my job in September that year because I was not able to manage my condition while working and took off 6 months to concentrate on healing.
I started a new job in March of 2018 and was on my path to healing and continued to do so. I was doing so well that I started gaining more than I ever weighed and by February of 2020, 10 years exactly from my diagnosis, I weighed 234 pounds. I thought I beat it! I was overweight!
Not so fast… March 9, 2020 I began feeling ill at work in my stomach. I was unable to work the rest of the week. I looked forward to my weekly Saturday Acupuncture appointment, but Covid-19 has everything closed. I continued to spiral into gastroparesis illness. Saw my gastroenterologist, we did tests to rule stuff out… nothing.
I continued to get sick and over the last year lost at least 80 pounds. I was down to 154 from 234. I may have been lower but stopped weighing myself. I have seen my gastroenterologist periodically, but there’s nothing that he can do… so I suffered. I was able to see my chiropractor during this time and when he inquired about my increasing weight loss and told him I had gastroparesis and he knew what it was and he began treatment on me to help my motility.
In late February NY State allowed Acupuncture to reopen and I was able to resume my treatments but have been slow to respond.
In addition, my thyroid has gone crazy with my weight changes and I’ve had other complications related to my hypothyroidism
In late June I requested for the first-time short-term disability and have not been able to work for 3 weeks so far and on July 22nd I was advised that my disability claim was denied. Gastroparesis is a “subjective” condition and because I have not been to the doctors more than once in the last month, my condition was deemed not disabling. Getting that answer took me back to that day in the ER and again nor having my suffering validated because someone doesn’t know about the condition.
This disease has destroyed my life, my relationships, my jobs. It’s terrible to see the looks you get back, the helpless stares from people that love you and are watching you waste away, or the looks you get from others wondering why you are so thin. It’s isolating in a way that I can’t describe but if you have this you just know.
I’m continually scared that one day it’s going to win.