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As it's #CFWeek, I wanted to share my story and experience with overnight feeding and how it changed my life completely, in the hope that it might help make the decision easier for someone potentially on the fence about having a feeding tube fitted. @cftrust @PearceWardMFT (1/11)
These are the bottles the feeds come in. Depending on your dose you may take more than 1. I'm currently taking 1 (500ml), but at first when I started my journey 2 years ago, I took 2 at a time. This can take anywhere from 3 to 8 hours to go through depending on your dose. (2/11)
This is the machine you're hooked up to. It's pretty quiet so it doesn't keep you awake at night. It beeps if anything goes wrong, and you use it to set your dose and the speed at which the feed enters your stomach. You can overdo it and make yourself sick so be careful! (3/11)
This is what 1 dose looks like. You have the tube that takes the feed from the bottles, through the machine to your stomach. A syringe for flushing your tube before and after, and Creon capsules to digest the feed. My dose is 12 creon taken 4 before, 4 midway and 4 after. (4/11)
I keep my feeds (and other medication and feed accessories) in these handy drawers beside my bed. That way I've got easy access to everything within an arms length, and if anything goes wrong with the feed overnight (extremely rare) I can hook up a new one quickly. (5/11)
This is what entry into my stomach looks like. An opening similar to an inflatable, this is changed every 4 months or so in clinic. Full disclosure, you can only have this after having a physical tube that comes out from your stomach for a few weeks while the wound heals. (6/11)
I had mine 2 years ago. Surgery was straight forward, was done in a couple of hours and again, full disclosure, the first few days were quite painful when the drugs wore off. I was kept in hospital while the team made sure there were no complications & that I could use it. (7/11)
Within days I started gaining weight. At no point in my life had I ever been more than 9 stone (125lbs), and considering I'm over 6 feet tall, I was GROSSLY thin. I'd tried everything - supplements, milkshakes, the lot. Nothing worked. From being around 10 years old... (8/11)
A feeding tube was always something that was discussed, but I instantly dismissed it every single time, for either pride reasons or simply because I naively believed I could gain the weight on my own. When I turned 30 I decided to bite the bullet. The results were instant (9/11)
I wish I had done this YEARS ago. I don't even NEED to feed anymore, and I have been told I can have it removed any time I want. I currently weigh 12st (168lbs). But the feeding tube will always be a part of me, because I know if anything happens, it's there for me to use (10/11)
This is me now. I've still got a long way to go, and am currently on a weight training program to get even fitter, but I hope my experience helps to make your decision easier, no matter whether you decide for or against it I can only reiterate that I wish I'd done it 10 years ago
