My new normal

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I can’t eat food anymore.

Gone are the days of baked stuffed shrimp at Twin Oaks, a cheeseburger at The Thirsty Beaver or breakfast at Miss Cranston Diner. I now eat through a PICC line in my left upper arm. I live 24/7 in nausea and in pain and am plagued with fatigue and dry heaving at all hours. You never realize just how much food is in your life, from quiet dinners at home to family gatherings and public events, until you can no longer have it. I can’t even enjoy a Del’s Lemonade anymore without severe stomach pain.

I had tried to keep forcing food in, but I would end up laying in a ball crying in my bed. I just could not eat anymore.

I have been living with an incurable chronic illness called Gastroparesis for several years, which is also called “paralysis of the stomach.” It was diagnosed by a GES (Gastric Emptying Study), which confirmed that my stomach was basically at a standstill.

The National Institutes of Health (NIH) estimates that more than 5 million people live with Gastroparesis.

My symptoms were maintained by Botox injections into my stomach via endoscopy by a GI for several years, but then this past November, the injections failed twice. It was all downhill after the holidays. My weight dropped approximately 120 pounds in a few months. I was malnourished and constantly dehydrated. I could no long handle eating and barely any beverages – it caused severe pain just to have one graham cracker. Drinking water hurts the most at this point.

Well, my GI was honest and gave up on me, as he could not help anymore; but, thankfully, my primary doctor got on the case fast and got me to a surgeon for intervention. They were placing a Jejunosotomy tube: J-tube for short. It is a feeding tube that is inserted into the second part of the small intestine (the jejunum) through the abdominal wall. It was meant for providing me with “feed” (a mixture of nutrients and vitamins that I would need to sustain myself) and as an easier way to take medications. The surgery failed. Twice. My body rejected both J Tubes. Those two surgeries were followed by a third one to “put things back in place” inside me. I am still recovering. It was a total of three major surgeries within a 4-month time span.

I was immediately put on a PICC line for TPN: total parenteral nutrition. I eat through my left arm and receive nutrition and fluid as I sleep each night. I don’t eat food anymore. I miss it so much.

The hardest question to answer is when I am asked, “are you feeling better?” I never will.

“Gastroparesis, or “paralysis of the stomach,” is a digestive motility disorder in which the stomach muscles fail to contract and move food from the stomach into the intestines at a slower than normal rate.  This slowing of the stomach emptying process can cause debilitating and sometimes life-threatening symptoms, including stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, esophageal damage, blood sugar fluctuations, bezoars, and overwhelming fatigue,” said co-author of Real Life Diaries: Living with Gastroparesis,” Melissa Adams VanHouten. The book was authored by Lynda Cheldelin Fell.

VanHouten also helps coordinate a private Facebook Gastroparesis support group with more than 14,000 members, which I joined a few months ago. There, I can ask any personal questions about procedures or issues and learn from others in a private setting. This illness does not discriminate, I have talked with college students, middle-aged men and woman, and even have seen photos of toddlers and babies with J-Tubes.

Without medical intervention, I would not be here today. I just fought off a blood infection from my PICC line which landed me a two-week hospital stay. The problem with a PICC line is it does get infected. From what I have read, you do not die from Gastroparesis but you can from the complications.

“August is national Gastroparesis Awareness Month. The most common known cause of this condition is Diabetes, which accounts for about one-third of the cases.  Other known causes of Gastroparesis include neurological disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications, and direct damage to the Vagus nerve,” said VanHouten

Most cases of Gastroparesis are labeled “idiopathic,” meaning that there is no known cause. Mine is idiopathic.

“As of now, there is no safe, reliable, or effective treatment for Gastroparesis and there is no cure. Available treatment options include often ineffective surgeries; medications which carry the risk of serious side effects; feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief,” said VanHouten.

For additional information, please contact the International Foundation for Functional Gastrointestinal Disorders (IFFGD) at www.iffgd.org or the Association of Gastrointestinal Motility Disorders (AGMD) at www.agmd-gimotility.org.

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