What’s the most delicious thing you’ve ever eaten?

Have you ever put something into your mouth and instantly melted away? (No, not that kind of thing) Let me talk about my grandma’s venison gravy – and venison. It is easily the best food I have ever tasted in my life sans Pho from iPho in Orlando, Florida.

Side story, my ex-husband and I spent two holidays in iPho due to the fact that neither of us could cook + laziness.

My grandmother first made her venison and venison roux in my childhood. The roux was always a special treat as it took more time to make and by the time the roux was ready, we were all clawing at the stove for anything edible. However, on rare occasions, she would make us the unicorn meal. Venison, roux, homemade mashed potatoes with homemade gravy.

Following the ambrosia – we would thence dash to the nearest gas station to buy Powerball tickets. Joking.

Truthfully, had I asked and added a few pleaseeeeee’s she would crack and make the nectar of the gods. I could feel my limbs taking on adamantine strength. My soul took flight.

Now I am a vegetarian 😂 So, Pho takes the vegetarian prize. Though, Grandma comes in for the win when she made my family the best vegan, vanilla, almond pancakes for us when I was very ill and unable to eat anything too substantial. She’s a wonderful human being and an amazing chef.

The best thing I have ever made that we enjoyed would have to be my own variation of Asian stir-fry. It contained DARING chik’n as the protein and many, many vegetables. Pineapple included.

I don’t get to eat the things that I would like to eat because of my gastric issues, but I adore exotic flavors and the culture they come from. I love eating different cuisine when I am able. The limitations that I have when it comes to my diet make trying new things hard and often dangerous. When I am able though, I absolutely jump on the opportunity.

I want to take this opportunity to talk a little bit about my feeding tube and the formula that I have to push through it in order to maintain a healthy weight.

I spoke about my gastric conditions in this post, but as a short recap – I have gastroparesis, I am missing 26” of my small intestines, and had a partial colectomy during the same procedure.

In April of 2020, I was hospitalized for septicemia and was in the ICU due to the serious nature of the infection. In the ICU, I caught C.DIFF (a very serious intestinal infection). The condition caused my small bowel to rupture, leaking intestinal fluid into my abdomen. I went septic again, my blood pressure hit rock bottom, and I was essentially dead. They took me into surgery, and after they fixed the leak, I had to have a temporary ileostomy to give my bowel and colon time to heal.

With the ileostomy, came other issues. I had a high output ostomy which mean’t that I lost a lot of fluid very rapidly. This led to low potassium, and low blood pressure. I had to take medication to slow down the output and to help retain potassium. I wasn’t able to eat very much. I never felt well enough to actually eat a lot.

Due to the removal of some of my intestines and colon, I then needed to begin using my feeding tube regularly so that I could actually gain enough weight to help me maintain a weight high enough to not die.

My feeding tube makes it so that all of my nutrition bypasses my stomach and the shorter part of my intestines (the duodenum) and connect to my jejunum instead, which is where the tube feed is dumped.

While this feeding tube has saved my life, it is not without annoyances. The formula that I have to use makes me very bloated and causes a syndrome called “dumping syndrome”. I’ll let you use your imagination, but it plays into the next point. It gives a person intense diarrhea due to the fact that is just a liquid.

There is also the problem of the tube. This is a physical object that goes through the abdominal wall and is then pushed through the stomach wall, and is held in place with a small balloon filled with 10cc’s of sterile water, a plastic bumper, or in some cases, sutures. The tube itself is roughly 20” long, or more, and snakes from the abdominal wall through the pyloric sphincter and then through the small intestines to the start of the jejunum.

It is placed during an outpatient procedure by an interventional radiologist while under a general anesthesia. The initial procedure is quite painful as it requires going through the abdominal muscle and stomach wall. However, for swaps (usually every 6-12 months) the procedure is done awake, using a guide wire, X-ray, and an interventional radiologist. It takes about 5 minutes and it is completely painless.

The formula that I use is called Osmolite and contains 1.5kcal per milliliter. I use 4 a day over an 8 hour period. This gives me 1500 kcal per feed. Pretty cool!

It can be messy, annoying to prepare, and difficult to manage socially, but without it I wouldn’t be here. It helped me go from 67 pounds to 123 pounds, so I couldn’t be less grateful.

It can be difficult in social situations to explain to friends that I can’t eat or drink with them. It is difficult to explain why I need to leave because my tube feed leaked and now I am sticky mess. It is hard to explain that I am not feeling well due to my food settling wrong. Difficult to manage the random beeping alerts the pump chimes when the tubing is kinked, the bag is empty, or the battery is low. Sometimes I tire of wearing the backpack everywhere. Wishing that I could go without.

However, with all of that said, I am alive, and I would not be here if it hadn’t been for my feeding tube. I would not be here to eat my grandmother’s amazing food (when I can). I wouldn’t be here to write these blog posts for you!