I quit eating over 4 years ago. I have gastroparesis because of my mitochondrial disease. August is Gastroparesis Awareness month. Before the month slips away into September I would like to share my story of why I quit eating.
Gastroparesis= a condition in which your stomach cannot empty itself of food in a normal fashion.
First know that this is not a wanted thing! My hubby and I have long loved cooking up huge meals for friends and family. All our get together’s or big family discussions occur in or around the kitchen as we work. Making, baking, cooking, sautéing, and braising is all fun for us. We are a family of foodies!
As the problems with my health increased over the years I realized that my GI system was affected by mito. This was not unexpected my children’s GI systems are affected as well. It is not uncommon for a person with mito to have problems with motility and gastroparesis.
I was making do until the stroke hit. April was the stroke by September I was down 60 pounds and had lost a pregnancy. I was sick.
I was admitted to the hospital immediately when the GI saw my condition. I was given IVs for hydration and tested to find out what was wrong. The first thing tested was a swallow study. I did poorly and was reduced to a liquid/very soft food diet. Basically no thicker than applesauce and not too much at once. When I drank liquids I needed to tuck my chin down to be sure the liquid would go down correctly.
The next test was a timed stomach emptying test. They feed me barium laced drink and scrambled eggs. I choked down what I could. The food should have cleared in about 4 hour window. At the 7 hour mark they gave up. Very little had left my stomach for my small intestine. I failed.
I had a PICC line placed to help with hydration. I also had a Gtube placed into my stomach to feed formula nutrition directly in. My stomach worked with that for over a year. After a series of illnesses my stomach once again slowed. The formula was just sitting in there.
The doctors said the illnesses had increased my gastroparesis. Now I needed a feed tube to my small intestine. It was fed through my Gtube at first. When that was a problem my doctor chose to make a separate Jtube into my small intestine. My formulas were switched to the most elemental formula available but my system could not tolerate enough to make it nutritionally acceptable. I needed more input than my system could provide.
After crashing metabolically from lack of protein and hydration I was forced to move to TPN total parenteral nutrition. There is a central line in my upper chest that threads a tube directly down to right above my heart. It feeds in over a long slow period of time my thick TPN formulation. Then during the day I get a specialized IV/electrolyte mixture to keep me hydrated and my sugar levels stable.
As the gastroparesis worsened my body’s ability to even intake liquid medications was compromised. I have to take most of my medications my IV now. There are only a few things that have to be taken via the digestive system. I have to crush them up and put them into my Jtube and hope for the best. Something as simple as Tylenol is not possible for me because it must be ingested through the stomach. All my medications and nutrition has to be carefully monitored by my TPN/IV meds team, ThriveRX and my TPN nutrition team at the VA.
Gastroparesis is not as uncommon as you would think. I recently found out a friend from high school has it. There is a disproportionally large number of woman that have it. Sadly almost every single one will have been accused of an eating disorder before finding the real culprit. This is only made worse by the timing of gastroparesis, often in your late teens.
Some people have mild chronic issues, others have flares of problems. Thankfully not everyone that has gastroparesis is destined for my path of needing feeding tubes and TPN. There are medications and surgical options like a stomach pacemaker that help many. Dietary changes can be extremely helpful.
Gastroparesis is very real. It causes nausea, pain, weight loss, nutrition loss, heartburn, and even sugars that are out of whack. Those of us that suffer from this need understanding.
Gastroparesis and it’s cause mitochondrial disease are Why I Quit Eating.