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What I Wish My Doctor Had Told Me About Gastroparesis

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Gastroparesis is full or partial paralysis of the stomach and causes symptoms such as; nausea, regurgitation, vomiting, abdominal pain, malnutrition, weight loss or weight gain and other complications like struggling to control blood sugar levels due to absorption issues. Treatments vary by the patient and their specific problems related to gastroparesis, as each patient is affected differently. There are some who can lead a fairly normal life, those who are completely debilitated and a full range of levels in between.

There are medications for nausea, acid reflux and/or GERD (gastroesophageal reflux disease), and medications that are supposed to stimulate the stomach muscles – as well as surgical options: feeding tubes (NJ/NG, G/GJ) that pass through the nose and into the stomach or tubes that go directly into the stomach through an opening in the skin, or an IV tube that goes directly through the chest, and a gastric neurostimulator, more commonly known as a gastric pacemaker to help break the stomach/brain cycle telling you that you are nauseas.

As of right now, there is not a cure for gastroparesis. A lot of patients are encouraged to make changes to their diet to improve symptoms in conjunction to medical intervention, but this can be extremely difficult— “safe” foods for patients with gastroparesis can be anything from not being able to eat solid food at all to only tolerating what most consider junk food. Some days all I can handle is a bowl of mashed potatoes to two fairly balanced meals, as long as I eat them before 4 pm. I never know what I will be able to tolerate because each day is different for me, especially if I am in the middle of a flare (a temporary increase in symptoms, normally severe).

The day of my diagnosis, I was told I had idiopathic gastroparesis (meaning they do not know what caused my gastroparesis), what medications I would start for treatment, and was asked not to Google anything about it. Their words were — “It will be unnecessarily upsetting. All you will see are patients with feeding tubes and you will never reach that point.” Yet, as soon as I returned home, this is exactly what I did. So, note to medical professionals, if you give a patient zero guidance or direction with something you are diagnosing them with, Google is pretty much their only option.

Over the last few years, I have learned and experienced a lot with gastroparesis. It has come with the highs of seeing improvements in my symptoms to the low of ending up in the ICU during a flare, which ultimately lead to having the gastric neurostimulator surgery. However, there is one thing about gastroparesis I wish someone had told me from the very beginning.

How it would affect my teeth.

Much to my dismay, I have never had perfect teeth, even though I take good care of them and they always required some form of intervention — braces, retainers, surgeries to remove any impacted into the bone, and my least favorite, the removal of my wisdom teeth. However, over the last year and a half, I have needed five root canals, five replacements and experienced more pain than I could ever put into words. And on a day where I mentally, physically, and financially felt I could not handle this anymore, I turned to my dentist and asked what was happening to me. Why did my teeth all the sudden decide to go bad?

I expected to hear my daily Sprite or Ginger Ale habit would be the culprit and panicked a little at the idea of not being able to have them anymore, as those products are one of my crutches to get me through evenings of regurgitation. But he looked at me with pity in his eyes and said, “constant vomiting and regurgitation are stripping your teeth, and the medications to prevent that from happening are making them weak and brittle. Without a cure, you are going to continue experiencing degradation.”

Needless to say, I cried my eyes out. I felt defeated by hearing “without a cure” because there may not be one in my lifetime and even if there was, I needed help right this very moment.

I have fought hard to keep my teeth, spending more money than I have in the bank, and depleting my emotional stores to help get me through more dental work.

So here I sit, in my early 30s, wondering if dentures will be the better option.

I’m not sure what I would have done if I had this information earlier — I could not change the outlook of my dental needs, but I may have chosen to get dentures in the beginning to save myself from debt and heartache, or I would have made sure to get preventative treatment earlier. But now that I do, I want others to know there is a possibility of the same thing happening to them. And, if they are in the same process I’m in now, for them to know they are not alone.

To those I say — I know this is hard and scary. It’s never easy to go through pain, constant stress or grief that comes when we lose so much due to chronic illness. Or to have something new and upsetting on top of everything else you battle with.  But keep going, little fighter. The sun will rise with a new day, bringing new hope and new opportunities for something to change, no matter how small that change may be.

If you or a loved one struggle with gastroparesis, please take a moment to check out these resources:

Gastroparesis Mayo Clinic

Medtronic Gastric Electrical Stimulation

G-PACT – Gastroparesis Patient Association for Cures and Treatments (Donate through Amazon Smile!)

Dysautonomia Support Network

Image via contributor

Originally published: February 9, 2021
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