My Gastroparesis Journey

Gastroparesis the beginning. I believe my journey began in 1989 with the first migraine, but I didn’t realize it. The first migraine I had was a reaction to Indocin. Or at least that’s what I thought at the time! And it may very well have been! What you also need to know? Is that I was an avid exerciser, biker, jogger, and really worked at being healthy. Always had sinus and constipation issues but did my best to get around those without slowing down and you would not see me near a doctors office–that is until it interfered with my life!

Which one winter it did, with pleurisy. My Dr just shook his head, when I said, ” I can’t run… Because it hurts to breathe!” And he says, “well yeah!”

One thing which might help you to understand my personal tenacity is to know I was hit straight in the driver’s side door in 1990. I was leaving an observation of elementary school to then drive two hours for exams towards the end of a semester, to finish a degree in early childhood education! My car was totaled, my tooth knocked out, lower front jar broken, muscles pulled from back of my neck, and all I could think of was “this is not! Happening right now! I am finishing this degree!” I would get my mouth wired, go home, return to the hospital with concussion symptoms and AGGRAVATED! But would return to my classes in a neck brace. Okay, so fast forward to many years later and I begin to have non- stop stomach viruses.

They were also linked to a period of time with massive migraines, sinus polyps, walking pneumonia, two sinus surgeries, allergies, and then the hunt began. In 1996 I had a hysterectomy and appendectomy because of repetitive ovarian cysts bursting and forming with endometriosis. Along with the ongoing -unrelenting GI issues. Things would calm for a period of time. Then I would go into fight to keep my job to only lose it again with nausea, vomiting, diarrhea, abdominal pain recurring again with bouts of constipation. The dehydration and migraines were a merry- go- round of symptoms hiding themselves from the normal tests. This made getting a diagnosis difficult back in 1996 – 1998.

I would be fired from my teaching job… Get another job .. Then be fired from it while in a hospital bed. Then while on the gastroenterologist merry-go-round a doctor told me, “I am referring you to a motility specialist.”

I immediately asked him, “Do you think I am crazy? What kind of doctor is that?” Because to be honest, this was getting a little crazy and at this point, I had never heard of a motility specialist!

He reassured me and this phase of my journey would lead me to Dr Thomas Abell– Thank God! Dr. Abell removed the question marks and got everything stabilized enough to do testing and begin the diagnostic phase. The answers weren’t easy.. But the point of this whole story is … I would eventually find out that I had gastroparesis, a paralyzed colon ( pseudo-obstruction,) received help for these migraines, ( abdominal based) and went on to peel back the layers of sjogrens and mitochondrial malabsorption disorder and Neuropathy.  The first set of doctors were the “best” but clueless! The second tried, but referred me, and that led me to the “third time is the charm!”

The third attempt I was blessed enough to meet a doctor who had trained under Dr Thomas Abell! He would go on to send me to South Carolina and Dr Lahr and have a colectomy – which changed life measurably. Did not change the facts, but made it less miserable! So, from a diagnosis in 1999 to today trying to stay alive–the theme is persevere one moment at a time. Doing what is necessary is not easy, nor do we always have the strength to do so, but it is better to go forward no matter how tedious or difficult!

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.