My Story Part Eighteen: The one where I get my life changing G-tube

Hi everyone!  This is the last post of this “My Story” series.  Thank you all for your support in my telling of this story, it means the world to me.  I know it’s hard with this being a chronological story and a blog posting it backwards.  But I’ve made a list of links on this page and this page that will help guide you through them in the correct order!

I am so excited to get to this part of the story!  This is where things finally start to look up and it makes me so happy.

My Story Part 18 2
This obviously isn’t me in the hospital! Just me being happy! (Wouldn’t it be amazing if hospitals were as cute as this place though?!)

Just a recap, I’m still hanging out in the hospital from the same visit as the end of Part 17!

After being in and out of the hospital and getting tube after tube shoved down my nose to drain my stomach, we all knew something had to give.  One morning, my doctor came in and asked what I thought about having a draining G-tube placed.  She knew that had been the initial plan at Mayo Clinic and that it didn’t end up working out due to my anatomy, but she was thinking about asking a surgeon if he would be so kind to place it for me.

While this was still a bit risky with my small bowel overlapping my stomach, it was the only option.  I was all for it.  I was so beyond ready to stop having to go to the hospital every little bit to do the same ol’ thing over and over.

She took the idea to her favorite surgeon, not knowing if he’d agree to do it or not, but he did!  We were all so excited.  He came into my room and told us that he had never placed a feeding tube before (typically they’re done endoscopically or radiologically) but was more than happy to help us out since those weren’t options that would work for me.

My Story Part 18 4
Just a few hours after the new tube was placed! That face says lots of pain ha!

Anthony was there with me through the whole ordeal!  The tube was placed on September 11th, and according to the camera roll on my computer, I was feeling great and already in Arkansas visiting Anthony by the 20th!  This tube changed my life.  I still wasn’t quite convinced that it was going to be all it was cracked up to be since I’d had the wishy-washy situation with the J-tube.  But I’m telling you from three and a half years later that it absolutely did.

My Story Part 18 13
Terra Studios with the blue birds of happiness in Arkansas!

With my G-tube, I am finally able to manage almost all day to day symptoms that come up from the comfort of my home.  Because the main thing that was leading me back to the hospital over and over again was the need for an NG tube and suction.  Now, I am able to just pop the tab on my trusty G-tube and let it out myself!

My Story Part 18 8
I was able to fully enjoy Halloween as a deer in 2014!

That’s not to say that other crazy things can’t happen.  For instance, I’ve had several tube malfunctions that sent me to the ER and one that landed me in the hospital for almost a week.  I’ve also had a couple of times that my G-tube was unable to relieve severe nausea that put me in the hospital.  This is also not to mention things that I’ve (thankfully) not had to deal with, but am always on the watch for, such as an actual obstruction or a central line infection (no line infections since my days with ports.)

My Story Part 18 15
Me and my momma at the Texas State Fair!

I still live with lots of ups and downs depending on how I spend my energy and whatever my body decides to do from day to day.  But I’ve gotten pretty good at figuring out what I can and cannot do and have learned (sometimes the hard way) what consequences I’m willing to deal with if I really want to go out on a limb and do something I might regret later (in a feeling bad sense, of course!)

My Story Part 18 9
More hikes with Anthony!

One other major point I want to add is that while this story could make it seem that after my tubes were placed I went on my merry way, the truth is they hurt really badly for quite a long time.  This is something that I would love to address in other posts as I learned to care for them in ways that worked best for me (and sometimes it was not what anyone advised me to do.)

My Story Part 18 6
Me and dad hanging out in Best Buy!

I spent many days not feeling well in bed and to be honest, I still do.  But when compared to where I was not even a year before this happened, I could never complain about the progress I had made.  My quality of life improved one thousand percent.

My Story Part 18 10
Me and my pal Rich!

As you can imagine, there is much more to my life story since I’m ending this post in September of 2014.  But this is the last big thing that happened that is pertinent to you understanding my story and where I’m coming from.  This was the goal in writing this all out – to give you my origin story.  Personally, going to a personal website that gives no background information helping you to understand where an individual is coming from and why they write what they write really bums me out.  I love knowing origin stories.  It helps me to better understand what’s happening in the now.  So, that is why I’ve done this long and drawn out version.  (Maybe it was overkill, who knows?)

My Story Part 18 11
The most fun man ❤

I sure hope you’ve enjoyed reading along as I’ve absolutely loved sharing with you all!

I will definitely do more life story posts such as more of Anthony and my love story, moving to Arkansas, getting our puppy, finding my new care team and many more!  My goal is to have posts on Mondays and Thursdays!  Let me know of anything you’re wanting to hear more about, I’d love to have any feedback to know what the people want!  I hope to see you here soon!

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3 thoughts on “My Story Part Eighteen: The one where I get my life changing G-tube

  1. Yay I just made it to the end of your story! So many similarities in mine – even sneaking Halls cough drops. The best when you have an NG tube causing so much pain. Most of the time I’ve had NGs for decompression my throat hurts so bad I can hardly talk.

    You mentioned you have some tips for showering with a port. I’ve still not figured it out. In my many years of TPN I had always had PICC lines but have lost access for them in my arms now. Showering with the PICC was so much easier because I used the DryPro PICC Protector. With my port I can’t figure out how to keep it dry. AquaGuard just falls off immediately and even saran wrap doesn’t help much. Do you have any ideas? I live for the day I get to deaccess for a bit and take a real shower.

    So glad to hear about the G and J tubes. I have had so many issues with NJ tubes constantly flipping and kinking and needing them replaced right away. Then I went in for the GJ placement only to be told by interventional radiology that I am so dilated in my stomach and intestine that it was too dangerous for them to do it. So now I need a surgeon to do it, as you know. I’m worried about having issues with the tubes and then needing to go have them fixed and I don’t live near a good hospital here. The closest one is in Chicago which takes us about 2 hours to get to, or I can go back to Michigan which is 5 hours. Just really worried about having problems with it. Otherwise I’d be happy to try it because vomiting and nausea take over my life. My manometry test (seems like that is what they were trying to do with you at Mayo) showed I have reverse motility in my duodenum so not only is my motility super slow and doesn’t really work but it goes backwards in areas which only makes me vomit more. Your story and all the others I have asked have said that being able to drain is life changing and I really would love that opportunity so I am becoming more and more convinced to try it instead of coming in for NG tube decompression.

    Keep up sharing your story! ❤
    Sara

    Liked by 1 person

    1. Ha! Halls are tops. And at least SORT of distract you from the dang tube.
      AquaGuards are my least favorite. That’s what I used when I had a port also. But I think my method for how I do it with my Hickman should work with a port. I’ll get that post ready for next week. It seems to be a huge need. Do you not get to deaccess for at least a couple hours? I know you infuse during the day so that’s a struggle.
      If you have lots of flipping and the reverse motility, maybe having separate tubes would be better rather than the GJ. Is that what you’re currently thinking?

      Thanks so much for your support Sara! It means so much ❤️

      Like

      1. Yep. Brought up a seperate G and J to my doctor. He wants me to consult with the surgeon though too to see what he thinks is best. I do get to deaccess for 12 hours each week which is heaven. Love the short time I have without it.

        Liked by 1 person

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