Being 5ft 11 and only weighing 7 and a half stone is not a good look on anyone, so when the dieticians suggested the idea of tube feeding I was more than enthusiastic. However, putting an NG tube down my throat every night wasn't for me, so the idea of having a PEG was put to me. Now the thought of having a hole in my stomach wasn't exactly one I was too comfortable with, but after being told of the benefits, such as not having to stuff an NG tube up my nose every night and still gaining the weight, I decided to go ahead with the idea. Lets face it, when you have an infection and you're coughing your guts up 24/7, the last thing on your mind is having a Big Mac. Having the PEG fitted is a way to get the calories your body needs and still keep your attention on getting your chest better.
After agreeing to have the PEG, it wasn't long until the nutrition nurses came up to the ward to see me, they explained the procedure and showed me the tube that I'd be having "fitted", along with all the info about keeping the site clean and the different sizes I would need to change to until I could have the button ( after about 6 months). Then they asked if I had any questions, I think they were expecting me to ask if the site would be sore or what I could use to clean it, however, the only thing I could think to ask was "can I put booze through it" after a few disconcerted looks and asking me why id rather put it through the tube rather than drink it, they said that I could, as the worst thing the alcohol would do is clean the tube!
It didn't take long to get my date for the procedure and I was pleased because it meant I could have it done while I was on the ward for my IVs, the procedure itself sounded pretty scary (having a tube put down my throat was a tad daunting) but the doctors and nurses made me feel at ease. I was freaking out on my way into the treatment room but after having the sedative IV everything was fine (imagine being really drunk but without vomit or the hangover) the procedure took about 15 minutes I think, I was pretty drugged up, and to be honest the most uncomfortable part was having the mouth guard put in place to stop me biting the endoscope. I thought being cut to make the hole would hurt a lot but I didn't actually notice. After having the tube "fitted" I was taken back to the endoscopy ward until the nurses from ward 26 came to get me. I was pretty out of it for the next hour or so, until the sedative wore off. I was given Tramadol for the pain and as long as I didn't cough too much I didn't really feel any discomfort.
After I finished my IVs I went home to continue feeding there, it took me a while to get used to sleeping with the tubes connected. I thought if I rolled around too much id somehow pull the tube out, but I didn't, I find putting a few strips of micropore tape over the peg gives me a bit more piece of mind. I started off with the smallest sized tube and was told I'd need to go up two more sizes before I could have the more discreet "button" fitted. At first I did feel self conscious about having something artificial sticking out of my stomach but when I started to see the benefits in terms of weight gain all that disappeared.
It took me a while to find out how much feed I could handle and how fast I could do it. I've built myself up to 1.5 litres at 250ml an hour which I find gives me enough calories for the day (3000 calories) but doesn't fill me up too much so that I can still eat during the day. After 6 months with the smallest tube I was able to have the larger size fitted, it's easily done, the smaller tube is cut off and the new, wider tube is fitted in its place, its painless and gets you one size closer to the button. I describe the button as looking like the valve on an inflatable chair or a pair of arm bands; it's a lot more discreet than the tubes and is held in place by a balloon that sits inside your stomach so that when it needs to be replaced you don't need a trip to endoscopy.
It's taken me a while to get into a routine with my feeds but now that I have, I think having the tube fitted was the best decision I've ever made. Having gained around 2 stone I feel so much better and I find that I have a lot fewer infections. I have more energy than I used to and I feel like a completely new person. When I was underweight I was constantly tired, in hospital every few months and I felt generally rubbish about myself. That's all changed now and I feel like I've got my life back.
