Sydney's interview
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How did all start?
I believe my first occurrence was in college. I was just suddenly unable to eat anything with severe stomach pain. I was living on rice krispies and the occasional lunchables. I lost 30 pounds in a very short span of time and was nauseated every time I ate. My second run in with this disease was two years ago. This time it was brought on by the removal of my IUD. I was severely ill and vomited anything I tried to eat. I lost 30 more pounds in a matter of two months, I was homebound and bed ridden unable to go to work for four months.
Do you already have a diagnosis? How long did it take you to get it?
I had biopsies done to try and diagnose the condition and found my stomach and it's lining were teeming with eosinophils. Technically it took me several years to get a diagnosis since no doctor believed I was really ill the first time round. All it took was a stomach biopsy to confirm.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was seen by a gastroenterologist who was woefully incompetent and prescribed acid reducers, then sent me to an allergist. I had many more tests done to try to confirm an allergy with no success. I limited my diet to try and identify trigger foods. Nothing really helped. I was given numerous different medications, some even being used off label. Nothing truly helped and I still experience regular nausea, vomiting, and stomach pain.
What has been the most useful thing for you so far?
Limiting my diet and peppermints. Lots and lots of peppermints and anti nausea meds.
What have been your biggest difficulties?
Being actively in a flare where I was unable to eat or go to work was really a struggle. I wished for an end and every time I get sick I panic that I'll end up back at the point again.
How has your social and family environment reacted? Have your social or family relationships changed?
My family are tired now of me saying im nauseous, but then again, so am I. For the most part as long as im in remission things are unchanged. We changed our diet in my house to suit my needs but that was a minor change for us.
What things have you stopped doing?
I've stopped eating food I didn't prepare as much as possible. Garlic is one of my main trigger foods and that can be snuck in anywhere.
What do you think about the future?
I think I'll only be able to live like this for so long before something had to give. Being sick constantly is no way to live.
So far, which years have been the best years in your life? What have you done during them?
This year was pretty good actually. I've been sick a lot but it's also been manageable. I got married and started my dream job so things are ok.
What would you like to do if you didn’t have your condition?
Eat garlic bread honestly. I miss it terribly.
If you had to describe your life in a sentence, what would it be?
It's exhausting.
Finally, what advice would you give to a person in a similar situation?
I know it hurts and I know that it seems like more than you can handle, but you'll get through to better times. I know you will.
