This blog is motivated by a post I read recently from a woman who was about two weeks into having her GJ feeding tube. Clearly (and by all means understandably) she was/is still struggling with her need for the tube on both a mental and emotional level. Her post made me think of myself SO MUCH that it was almost startling to me how alike we were. Her biggest concern was “how long before I can get rid of it?”. That was 100% me when I got my FIRST tube in 2012, I had a peg tube placed in January of 2012 and I spent every day hating it and planning on how I would get rid of it. There was never a THOUGHT in my head that my being a “tubie” would be anything more than a short term solution to my issues, and CERTAINLY never a thought that I might need a tube forever.
So I completely understand what she was feeling, and my heart was breaking for her because I know the anxiety and panic over hating something SO MUCH and having it cause you so much angst that you feel like you cannot stay in your own skin. For me it was a bad choice to “get rid of my tube” the way I did, against medical advice and at my insistence. When I had them remove my first tube I had no diagnosis, no treatment that was working and no clue how I would deal with and survive the rest of my life. However my stubborn “Hell No” attitude and emotional upset at my situation far outweighed any logical reasoning at the time, and I did make them remove the tube.
My mistake because (as you may know) a little over a year after that removal by force, I in fact had to have another tube placed ~ one that I still have a year and a half later. The difference for me NOW is that I came to terms with my tube this time around. I no longer view it as an intruder in my life, or some badge of weakness and failure as I once did. The reality is that this tube has kept me out of the hospital so MANY times. I can hydrate and feed through my tube, I can even crush and put medication through it if I need to and when you have gastroparesis those things are MAJOR reasons for hospital admissions. In the last year and a half my hospital visit have decreased overall by 95% from the previous two years. For ME that means this tube is GOLDEN.
I’m not suggesting that is not “difficult” and that it was not a job to get myself to the point where I did come to grips with the necessity of the tube ~ but it was effort well spent. From a physical point of view it’s really not very “life invasive”. You can’t “see it” in the streets so to speak, if you meet me and you don’t know my story – you have no idea that I have the tube. Furthermore 98% of the people who DO know have never seen it, it’s not obtrusive or obvious in any way. As far as “dealing with it”, it’s cumbersome in the beginning ~ but as with most other things in life I adjusted. To me it’s like getting used to needing any other piece of “medical equipment” whether it’s glasses, hearing aids, a wheelchair a replacement limb for someone who suffers a loss like that, ALL of those things are simply equipment used to “restore life” to one degree or another. I think that “tubies” just feel like it’s such a “different” thing that it makes them stand out more. Someone wearing glasses is so common that you don’t even realize that those glasses are in fact “medical equipment” used to restore quality of life; but they are and so is the tube.
If you think about it in THOSE terms for a little while you start to realize that it’s not “so bad”. I mean for me personally if there was a “choice” given to me and I could pick which thing I’d need ~ I’d choose my tube over the wheelchair all day long. So when I want to feel sorry for myself I just think about THAT, imagine never being able to walk again, imagine having to build your home ~ your transportation ~ your entire LIFE around that wheelchair. When you put it in perspective like that somehow the tube isn’t ‘so bad’. I’m not suggesting a better or worse comparison between any condition or adaptive equipment, except to say that sometimes it helps you to maintain perspective.
I am able to “hide” my tube, in my case I choose to talk about it to offer hope to and help educate others; but that was my personal choice. Generally if you have a tube ~ no one needs to know and no one will know unless you share that with them. I’m also not suggesting that it’s “such a great thing and I”m so happy I had to get it”. No I’m not “happy” that my stomach is paralyzed or that I need this tube. I AM however happy and grateful that I was given it, I’m grateful that it DOES help me, and I’m grateful that it’s not as INTRUSIVE as some other adaptive equipment is in my physical world. Anyone who knows me knows that being Mary Poppinsish is not a part of my personality naturally, far from it. So I’m not trying to blow sunshine or make it seem like the process is full of daisies and beautiful little birdies. It SUCKS I’ll give you that, it sucks that I need this and it sucks that YOU need it. However, once you get PAST that moment you can and will reach a place of acceptance and understanding.
I don’t begrudge ANYONE their moment of turmoil over having to get a feeding tube placed, I had my moment and I needed it. The one thing I did NOT have when this happened for me was the comfort of talking to anyone who had lived it before. I never knew ANYONE who had such a thing, and I felt like a complete freak of nature and like the tube made my life no longer worth living. That is my point and my goal, to just reach out to you and say HEY, I DO understand – here look at me I’m living breathing PROOF. I understand EVERYTHING you are feeling and you are not crazy, it’s ALL normal. More importantly though I’m here to tell you that it CAN and WILL get better. I know it FEELS like the end of the world, but if you take it a day at a time and hold on and work on it in all arena’s I PROMISE you that it can and will get better.
I’m not happy that I’m a tubie, I’m not thinking this is the “best thing ever” ~ but I am thinking that I’m lucky the tube is an option, and I’m lucky to be alive to have the ability to share my story. If I can give ONE “New Tubie” even a RAY of hope for brighter days ahead then everything I’ve gone though and continue to go through is worth it. Your tube does not define you and you are stronger than you think, just give yourself a chance. If there are any tubies reading this who have questions or need encouragement I WELCOME your contact, get me on facebook or on twitter or at e-mail PAULAJACKSON23@GMAIL.COM, (put tubie in the subject line) and I’m more than happy to talk with you and share my experience. I’m not any kind of “qualified professional” but I AM qualified to tell you that I know what it’s like from the worst days to the best, and if you just need someone who understands I’m more than happy to talk with you and share my own personal experiences.
Thanks for stopping by, have a great day all!