My digestive system doesn’t function correctly because of my gastroparesis and mast cell activation syndrome, so I have to get all my nutrition through a permanent feeding tube. When I was discharged after my surgery, I quickly learned how much I didn’t know – little things like where to get medical tape, and big things like how to flush my tube without filling it with air and where to get tube extensions. I did have a home nurse that visited a few times, but believe it or not she didn’t know most of these things either. She was able to help me with some of my questions, but others required many, many frustrated phone calls. My doctors didn’t know, the hospital didn’t know, and they couldn’t even point me to someone who might have the answers.
Once I finally figured out the logistics, I began to realize that I didn’t know what I didn’t know. What does that mean? Well, for example, my home infusion company was sending me 4×4 drainage sponges, which are really big, and I was cutting them to make them smaller. Turns out 2×2 sponges are available, but I had no idea, and nobody had ever asked what I wanted or offered the information. The same went for my actual tube – a standard long tube was placed initially, and I hated it – it was big and heavy and pulled painfully. When I had my endoscopy to try to fix the position (we had all sorts of trouble getting it to advance into my jejunum) I mentioned I wished they made smaller tubes, one of the nurses sounded surprised and said “well, they make low profile tubes, you can ask your doctor about it.” Again, how would I have known they made different kinds of tubes?
That phenomenon right there is the main thing that prompted me to start this blog. I didn’t even know what questions to ask, and there was no education being offered, so I had to do it all myself. I started writing things down and collecting the information that helped me the most. I came across several helpful organizations and resources, which were way more helpful that my doctors! My Interventional Radiology department, who changes my tube every three months, were also helpful.
To read more about feeding tubes and tube feeding formulas, check out the post links to the right!