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Susan Gross’s Story

I’ve always had stomach/digestive issues as far back as I can remember, but in my mid-twenties it became apparent that that it was more than just GI upset.  I remember in 1985, at around 24 years old having a Cesare Salad that caused the most horrible GI reaction – my stomach literally blew up with so much gas that I had to unzip my pants and leave the restaurant.

Fast forward to my mid-30’s and I was still living with pain after eating certain foods, and even the best GI doctors just categorized me as having “IBS”.  Thus, I was given heartburn medications and anti-spasm drugs (little did I know that some of these drugs were actually working against me, as I would later find out that I had a motility issue).  I was getting worse over the years, and more foods were added to my list of foods that caused me severe distress (bloating, cramps, and severe pain).

Fast forward a few more years to 2001, when I was hospitalized for a gallbladder attack; which subsequently ended in its removal. At that point I felt that my GI issues were resolved; but they weren’t – and in fact they got worse. I then reached out to Johns Hopkins Hospital in 2002 where I was put on a wait list to have a consultation with Dr. Brian Lacy.  My appointment with him was mind opening – as after describing all my symptoms and food reactions, he said he was 100% sure that I had Gastroparesis.  I never heard about this GI condition.  The following week I had the Gastric Emptying Study test, which he stopped the 4-hour study at around the 3-hour mark, as more than 50% of the food was not digested. Bingo – after nearly a lifetime of suffering, I had a diagnoses; Idiopathic Gastroparesis. 

With that, he told me about the Low FODMAP diet, as well as prescribed Domperidone.  The medication Domperidone was a life changer for me, as well as being knowledgeable of the “good/bad” foods to eat or avoid per the Low FODMAP diet.  Fast forward to 2021, and 20 years of taking Domperidone, and now I started having issues with receiving it from the pharmacy in New Zealand that for years shipped it to me – as US Customs confiscated it due to its continued non-FDA approval of this life saving drug.  I have since found another source for my Domperidone, with one being in the US – the only pharmacy approved by the FDA for dispensing this drug.  The more I learn about the FDA’s approach to administering Domperidone in the US, the more infuriated I am – as this drug is widely administered as an OTC around the world.  Today I have some balance in my life, but it is still a daily struggle. I adhere to the Low FODMAP diet, am gluten free, and use probiotics and digestive enzymes along with my Domperidone to eat.  My diet is very restrictive, but it sustains me. 

Thankfully I’ve never had the more severe aspects of GP, such as vomiting or needing to use a J-Tube.  I live in fear that the life-saving drug, Domperidone, will cease to be allowed in the US – and that is why I am writing my story so that this drug can get to total FDA approval for those like me who need it just to exist.

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