Happy feeding tube awareness week! In honor of this week, I thought I would share my story of how I got a feeding tube.

 

My journey with feeding tubes started over four years ago. I was having stomach issues for three and a half years prior, but things did not get worse until I got pancreatitis my junior year in high school. After that, I started to have extreme pain every time I tried to eat that also included bloating, nausea, constipation, and distention. I started to rapidly lose weight and that is when I received my first tube. I had an NJ tube, or nasojejunal, which means a tube went in my nose and by passed my stomach so it is in my jejunal, or small intestines. I was able to gain some weight back and got my tube pulled out.

 

 

Towards the end of my senior, I started not to be able to eat again. The pain was too much to handle from eating. I started to get extremely thin and malnourished. I was then diagnosed with chronic intestinal pseudo obstruction, or CIPO. In short, CIPO is when your muscles and/or nerves cause symptoms like a bowel obstruction, yet there actually none. The intestines cannot contract and push food, stool, fluid, and air through the intestines. This diagnosis led me to be on total parenteral nutrition, or TPN. TPN is intravenous nutrition. It does not go into your GI tract, but instead through your veins. This allowed me to have a bowel rest and have nothing going into my stomach or intestines. A broviac line, which is a central line, was placed into my chest so I could have access to receive my TPN. After a few months I was able to gain back all of my weight. It was then decided to trial being off of TPN and try food again.

I was doing okay for a little with eating, but it did not last long. Once again I lost all the weight I had gained and then some. I was at my all time lowest weight. I went back into the hospital for immediate nutrition and it was decided that I should try going back to tube feeds instead of TPN. I had an NG (nasogastric) tube placed, which meant I had another tube go through my nose and this time it went right into my stomach. I gained back my weight again, but the feeds were causing so much pain, nausea, distention, constipation, and bloating still.

 (before and after getting nutrition for three months)

 

After more testing, I was diagnosed with gastroparesis. Gastroparesis means stomach paralysis. It is a motility disorder that delays gastric emptying so food slowly moves through your stomach and into your intestines or does not move at all. Because of this and my CIPO diagnoses, we concluded that it was best to go with a more permanent tube and a different type.

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I now have a GJ feeding tube. It stands for gastrostomy-jejunostomy, which means the tube is in both your stomach and intestines. I have this particular one so I can do tube feeds through the J port that goes into the intestines to avoid the pain of feeding into my stomach. The G port goes into my stomach to vent air out and to drain stomach acid.

While my feeding tube does not cure me from all my medical problems, it stops me from becoming malnourished. I still have pain and other symptoms, but I have a little more energy to do something every once in a while. Without a feeding tube, I would not be here. It has literally saved my life more than once and for that I am grateful to have one.

 

This Spotlight Story  was written by Taylor Kulp: I am 20 years old from Pennsylvania. I have multiple chronic medical conditions and absolutely love dogs.  Instagram: taylornkulp

 

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