“It’s because of my button that I am finally able to live a quite normal life.”
I was born in 1990 and I looked like a mostly healthy baby, however, I was severely underweight. Health care professionals thought that I was just a picky eater and my parents were often told that I would eat when I was hungry enough. Well, this was not the case for me and I was a frequent visitor in the ER as an infant. Ultimately, I developed an ability to eat, but I have never eaten nearly enough and I have failed to thrive as a result.
Today, I have an enteral feeding tube due to severe IBS that was therapy resistant, leaving me severely malnourished and often dehydrated. I am also suspected of having sensory process disorder giving me issues with food texture and a sensitive mouth. In 2015, I received my first NG tube. On Christmas of the same year, my parents finally heard me say “I am hungry!” They had lost all hope of me ever being hungry, so imagine the joy when they heard that.
The surgery team still refused to give me a G-tube though, because I had no issues swallowing in their opinion and they thought a G-tube was unnecessary. But, after three refusals on my letter of referral, I finally received a positive response. On January 25th, 2016, I went in for surgery to get a G-tube.
Post- op, I had a long dangly PEG tube with an inside bumper and outside disc for eight weeks. Let’s just say I hated it! After the initial eight weeks, the PEG tube was changed to a Mic-Key bolus with balloon. I had to wear that for another two weeks. The Mic-Key was constantly leaking, causing bad granulation tissue, and the outside disc loosened all the time. Also, it was difficult to hide and it was leaking way too much formula and gastric juices.
As soon as I was allowed to post-op, I changed to the AMT MiniOne Low profile balloon button G-tube. I was one happy girl, celebrating getting rid of that uncomfortable dangly tube. I chose the AMT MiniOne Low profile balloon button G-tube because I wanted a button that was easy to hide and wouldn’t draw attention, even if I was wearing tight clothes. I didn’t want to change my way of dressing just because I needed a button. For me, comfort, durability, and an easy to hide button is important. Wearing the MiniOne ensures me all of those things.
The AMT MiniOne is comfortable, easy to hide and much more adaptable to the user because of the fact that I can change the water filling volume depending on what works for me. As a bonus, it also glows-in-the dark and even though I am an adult, I absolutely love it!
Today, I have been a proud tubie for almost one year! I have been living my life to the fullest, doing what every 26-year old would normally do. This wouldn’t be possible without my Minione button. I have been on road trips, night clubs with my friends, restaurants, parties, sleepovers, water parks, theaters and I will even be back horseback riding soon.
It’s because of my button that I am finally able to live a quite normal life. I take every possibility I can to educate people that sometimes you don’t have to have a visible illness to need a G-tube. My tube is here to stay for the rest of my life. It’s because of the MiniOne that I am able to live my life and thrive while doing so.