Does anyone with Gastroparesis actually remember what “Normal” feels like? When I think back, I’m not sure if I have ever fully known what “normal” is. When I was in elementary school I was hospitalized for some time to figure out what was mysteriously going on with my non-stop vomiting & stomach cramping. Fast forward to my junior year of high school and I had my first endoscopy. Fast forward again to my freshman year of college and a friend rushing me to the emergency room because I couldn’t stop vomiting. Fast forward some more and another endoscopy and my first gastric emptying study (more about these in future blogs). Fast forward again and a colonoscopy, endoscopy, and another gastric emptying stomach. Sprinkle in a ton of IVs and that in a nutshell has been my life.
Granted I had periods of not being as ill as other periods. However, every four years it was as if my body had completely shut down. It was bizarre how it occurred on such a cycle. I’m not sure if others with Gastroparesis have experienced this. To my knowledge I have not heard of anyone else encountering this. All of my friends growing up know that emergency room visits to stop vomiting were a way of life with me but somehow I was able to lead a fairly active life. I ran cross-country, marched in the marching band, acted in plays, sang in the choir, was an the honor roll, and spent plenty of times with my friends. I weighted a wopping 95 pounds which resulted in anorexic accusations (more on this in future blogs).
In college, I was somewhat better with my health and also remained active. However, there were plenty of ER visits. Then somehow in my 20s I was able to lead a semi-normal life. I had minimal symptoms and felt pretty good. It was odd. Then my health tanked for awhile and I had my gallbladder removed (it was barely functioning so there was also a dye test). I felt better for a handful of years and then a couple of years ago I tanked like I had never tanked before. This resulted in the endoscopy, colonoscopy, and gastric emptying study and then a diagnosis for all of this: Gastroparesis.
I went to a really dark place for awhile at the thought of the permanence of all of the this. Depression is an understatement. Pain is an understatement. Sometimes vomiting to the point of losing my voice. It was hell. Then somewhere around the beginning of this year I began to turn it around mentally and try to figure out any and all ways to have some relief. Things are starting to turn around. I have no idea how long it will last, but I am going to enjoy every minute of it I can get!
But let’s recap the medical procedures I have had done in 35 years time:
- 3 Endoscopies
- 1 Colonoscopy
- 2 Gastric Emptying Studies (mmm…radioactive eggs)
- 1 Radioactive Dye Test
- EKG (for approval for Canadian medicine)
- Numerous Barium Shakes
- Numerous Digestive X-Rays
- Countless Stool Samples (nothing quite like sitting in a lobby holding a bag of your own excrement)
- Countless Blood Draws (usually 6-7 large tubes 4-5 times per year)
- Countless IVs (6-7 last year alone)
Sadly, this list doesn’t even begin to compare to most GPers. I’ve had it pretty good, so that is saying something about what life with Gastroparesis is like!
take your list and add 3 more colonoscopies, a virtual colonoscopy, surgery stent placements and removal and numerous ct’s all in the last 9 yrs. Although I do have to say that I have not tried the Canadian medicine. If there had been more education to the Dr’s, all of these repeated tests would not have to be done.
Wow, you both have had double on the amount of tests that have been run on me… I was never told to provide stool samples, oddly enough, no EKG or even an IV.
As for the “remissions,” I have heard that it can happen. Between 2006-2009 were actually tolerable, but then between 2010-2011 was the worst (and that’s when I was finally diagnosed with GP)… now the past couple years it’s leveled out again… so odd.
They say that a woman’s chemistry changes every 7 years… not sure again if this is the hormone connection or what… maybe men that have GP have more hormonal sensitivity?
I was in my late 20s when I started getting bad and scared what was wrong with me… I wonder if we will get worse or better as we age… I know it’s not worth worrying about but I still can’t help it…