This week is feeding tube awareness week. A feeding tube is a tube insterted into the gastrointestinal area for feeding. Most people with CHARGE have a tube for at least the first few years while others like me will have it all their life.
People usualy get a tube because they can not tollerate food orally for some reason. There are different types of tubes. I have a gastrostomy which I think is the most common. I had my tube inserted at 8 weeks and at 2, I got a jejunostomy where the tube is placed in the jejunal track. I had a bag with it to protect my skin from leakages and the gastrostomy drained. I was fed like this up untill I was 12 and then things stopped working and they had to put in a central line and give me IV nutrition. At 17 they were able to have me feed through gastrostomy and when I was 20 they were able to surgically close the jejunostomy site.
Some people also use nasal gastric tubes as a baby wich is the same thing but the tube goes into the nostril. A tube can also go in via the mouth which is not as common.
There are many different types of tubes. Some need to be surgically inserted and changed, while others are quite simple. Most people will get a tube that looks like a small button and this is easy to change. I have a tube that is clear and hangs out. I connect my feeding line to this and have my formula for up to 12 hours a day.
There are two ways people are fed. They can be fed via gravity using a syringe or through a feeding pump at a set rate. I am fed through the pump because I can’t handle too much volume too fast.
There are also many different formulas and I think I have tried most out there. There are three main companies I know of that supply the feeds and each one packages it differently. It can come in a can, bottles or a bag. I have nutrison which comes in a litre bag. Some people even make their own blends using every day foodstuffs like veggies and meat. Some companies even pre-make the blends so you don’t have to make it.
I am grateful for my tube. Without it, I would not be here today, but some days I wish I could get rid of it. That is not possible though as I have many food intolerances and other issues. But one day there might be something out there that will help. That is my wish.