When I was diagnosed
with gastroparesis, my gastroenterologist told me that I may never get better
and recommended that I take a medication to help my stomach function. The
first recommendation was an antibiotic with every meal. I didn’t want to
do this, so she then recommended taking Reglan, a medication that hospitalized
my maternal grandmother for weeks. She and I have had parallel reactions
to several medications, so I was wary of trying it. Her last try was a
non FDA approved medication that would have to be made a compound pharmacy, and
not covered by insurance. Now, I know the FDA is far from perfect, and
that there are a lot of medications that are not approved here but are in
Europe, but my fear was what if this drug worked? I’d then be stuck paying
completely out of pocket for who knows how long...and so I declined again.
I told her I read that it could be controlled by diet, and I’d like
to try that first. After this appointment I called the nurse, not sure if
I was supposed to make a follow-up appointment. Apparently, since I
refused medications, the doctor didn’t need to see me again.
Learning what my
body could and could not digest took years to figure out, and my body continues
to be a science experiment. The protocol for gastroparesis (many small
meals consisting of very low fat/fiber) conflicted with that for interstitial
cystitis (low acid/potassium), leaving very few truly “safe” foods. Early
on, a bad reaction to something as simple as cooked veggies typically lasted days, so
Friday nights became Experiment Night. Can I eat sautéed bell pepper?
How cooked do the carrots *need* to be? I’m a seafood eating
vegetarian, and life became surrounded by trial and error. Every few
months I’d try something again and hope it would work this time, and I found
that over time some foods could be safely added back into rotation.
I spent hours on the
internet, reading blogs and articles by nutritionists and learning about
digestion, how the body processes food, and elimination diets. I’ve tried a myriad of
supplements, and have waffled on how “high quality” I need to go (or can go)
without busting my budget. I’ve learned about the joy of probiotics and
the necessity of magnesium. I take zinc and omega 3-6-9. I know that
there’s a chance I just have really expensive pee, but I stop taking a
supplement now and then and I feel the difference. It’s good to know the
effort and expense is worth it.
For years, the
prospect of eating out caused me great anxiety. Not only would I have
limited control over the food, but what if I had a sudden flare of nausea?
Would the people there understand? I was lucky in my close friends
and family, who understood that I needed to have full control of which
restaurant we were going to, and that I had to be able to look at the menu
online prior to going (frankly, this is still somewhat true). To this day
I assess how each meal made me feel, nutritional levels, what I might eat at
the next meal to balance the nutrition. But this level of self assessment
has a cost: I didn’t do a whole lot of “living” in my mid and late 20s because
each and every day was a struggle, an assessment, a risk. I could barely
plan beyond the next meal and it was exhausting.
It’s been nearly a
decade and to everyone’s surprise (mine included), I’m so much better than
where I started. I can have small doses of hummus, a few roasted Brussels
sprouts, a raw unpeeled apple, a small side salad. These were unthinkable
in the beginning and for many years after. I’m still constantly assessing
“how I’m feeling” to help me gauge what I might be able to eat next, and still
have spontaneous bad reactions to foods that have been okay. Along the
way I’ve had an understanding and helpful internist and for much of this
journey, a friend who is a holistic nutritionist. These two women helped fill
the gap of knowledge of a formal nutritionist or dietician, neither of which
were covered by my insurance and which I simply couldn’t afford at the time. It
involved a lot of communication and research on both of their parts, and mine
as well.
I’m glad I was able
to advocate for myself early on and that I listened to my gut (both physical
and metaphorical). To me, this entire experience is what I hope for
anyone living with chronic illness: a belief in yourself, a fantastic support
system of close friends and family, and the encouragement of professionals
helping you listen to your body.
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