The Time I Never got Better

The story of Jennifer

It was the first week in November of 2014, a fantastic event had just taken place, as my capoeira Mestre, just returned from a year long bike ride from Berkeley, CA to Bahia, Brazil, which he began on his 70th birthday.

It was a great celebration for us all, and people came from all over the the world for our event. One of my house guests had the stomach flu, it began during his last day with us, and he quickly recovered.

As usual, it spread through my family. I got it, my daughter got it. My friend got well, my daughter got well, I never did.

I bargained with myself that I was just “run down”, and I was checked for parasites and treated for travelers diarrhea. Only, this was a special level of intensity. It would not stop, nothing would stop what I began to refer to as the wrath of vomit and diarrhea.

Several times in the ER for rehydration and pain management. My body became so weak, my back injury flared. Covered by the mask of opioids, it seemed that my GI problems were gone.

As soon as the opioids were stopped the symptoms reappeared. I spent months and had an unnecessary surgery at UCSF, due to a misdiagnosis. Being a woman, of course, most of my symptoms must be emotional, and I was told I had IBS.

My foods began to diminish. Some foods I could eat, some I could not, but, I saw no pattern. Slowly I went from being able to eat minimal, to minuscule to nothing and a liquid diet was all I could manage. By December 26th, I was on a liquid only diet, but could take 6 drinks in a day. By mid January I was down to 2 Orgain drinks per day.

Luckily, I live in the Bay Area, and I went to the digestive health clinic at Stanford university. My tireless gastrointestinal specialist discovered, (on a repeat colonoscopy), that there was Eosinophilic abnormalities. She decided to repeat the endoscopy, (I say repeat, because they did all of these tests at UCSF), and she found more eosinophilic abnormalities.

After 16 months of the wrath, pain and life as a shut in, I was finally diagnosed with Eosinophilic gastroenteritis and Eosinophilic esophagitis. EGE and EOE, respectively.

I know there is no cure, I know knowledge is limited and perhaps one day I’ll be able to eat again. Until then, it’s one moment at a time.