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The Pressure to Make the 'Right' Decision for Your Health, When One Doesn’t Exist

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When I was diagnosed with gastroparesis two years ago, I had no idea where that diagnosis would take me. Among all of the symptoms, the most difficult aspect for me to deal with has always been the dreaded feeling of not knowing. Not knowing why this happened to my body, not knowing what medications to take, not knowing if the meal I eat will leave me sick for days to come…

Many of the people diagnosed with gastroparesis do not know why this condition sprung up in their lives. Imagine waking up one day and feeling like you have a stomach virus… then imagine that feeling never going away. The basics of gastroparesis include persistent nausea, vomiting, chronic stomach pain, uncontrolled weight loss, indigestion, fatigue, malnutrition, and loss of appetite among others.

When I first delved into treatment, I was up for whatever would “fix” me. But I soon realized a “fix” wasn’t what I truly needed to be looking for. With no known cure, there is no one-size-fits-all treatment. I tried multiple medications, multiple doctors, different procedures. Nothing improved my quality of life and each time something didn’t work, I would lose a little bit of faith that anything would be able to make a difference. Not knowing how to help myself was one of the worst feelings I have ever experienced.

By the summer of 2015, I was unable to eat and down 30 pounds, living off TPN infusions 12 hours a day. That’s when my doctor suggested the implantation of a gastric neurostimulator (or as some know it, a gastric pacemaker). Like everything else, this was not a guaranteed fix. It works for some and not for others. The risk this time was higher than any other treatment or procedure I’d had… a major surgery, cutting open my abdomen and implanting a foreign device inside. In addition, the FDA has only approved the neurostimulator as a humanitarian device used in the treatment of gastroparesis… meaning, there is not yet enough evidence to prove it is an effective treatment, since it is still a fairly new option for patients with this condition.

For me, it was a no-brainer. I would take the risk. I went into my surgery more hopeful than I had allowed myself to be in a long time. The neurostimulator did its job. By blocking nerve signals from my stomach to my brain, it helped curbed my overwhelming nausea. I was able to eat food again without feeling sick immediately. I wasn’t back to normal, I still needed to carefully choose the foods I ate and the amounts, but to be able to have a choice was huge for me.

Unfortunately, a few months ago I began having shocking pains within minutes after eating… near where the neurostimulator was implanted. With all other problems ruled out and months of medications trying to curb the pain, the neurostimulator was shut off. Within minutes, my pain drastically decreased.

There was no black and white answer to my pain. Doctors told me sometimes this happens to patients. I was so discouraged. With the stimulator turned off, my original symptoms came flooding back within days. I wasn’t ready to give up on the device that has helped me so much and be left to find a completely different treatment.

My surgeon had seen these symptoms in other patients with the stimulation system and he said he had replaced a number of devices that were causing patient’s pain, pain that had no clear cause. Those patients found relief and success with their new neurostimulators. The catch: He couldn’t guarantee I would see the same results.

I found myself back at square one but, this time I wasn’t so quick to jump back on the operating table. I had put myself through major surgery a year before, but what if I did it again and got no reward? For many who have with chronic illnesses, they face the same dilemma. Whether it’s surgery, new treatments, new medications… many times there is no “right” choice to make in the moment. Patients must make the choice that they feel is right for them… not what has worked for someone else. The weight of these decisions is incredibly overwhelming.

But, I have found that I must allow my faith to be stronger than my fear. In a week, I’ll undergo surgery again to receive a new stimulation system. I know that this decision isn’t for everyone, but I strongly believe it’s the right decision for me. One of the most important things I have learned over the last two years is this… No one knows your body better than you know yourself. You are the best advocate for your health. Never let someone dismiss your opinions, because your opinion should always be the most important.

Originally published: September 30, 2016
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