This might come as a bit of a surprise seeing as how last week I pretty much spammed you with posts for Feeding Tube Awareness Week, but here I am a week later and I no longer have a feeding tube.
Whoa what? What’s going on? When did this happen?
I’m just going to tell you the whole story, okay?
Here is the story, start to finish, from the day my feeding tube went in to the day it came out.
And now here it is in words.
Once upon a time last week at my GI appointment, we decided that we were going to go ahead and have my feeding tube removed. I was hesitant to tell anyone because I knew that without a proper explanation it would be really easy to get the wrong idea and think that this is a good thing. It is a good thing, but it’s also a bad thing.
Let’s start with a good thing, like the fact that my abdomen is no longer constantly aching or in pain. Right from the start my belly decided it didn’t want the foreign object there and so it has spent the last two years trying to get rid of my tube. I had problem after problem with it, more problems than are normal, but I put up with those problems because what else could I do? The tube was hurting a lot, but it was helping a lot, too, seeing as it was how I got all the calories I needed to do important things like stay alive. Except then it stopped being helpful and for over a year now I have been getting all of my nutrition from TPN.
Which brings me to a bad thing about this. Despite the fact that my body hated my feeding tube from the get go, tube feeds are a lot better for you than TPN. TPN means a central line which means the possibility of blood stream infections. It’s also not especially friendly to your liver. And it’s just not natural or convenient or easy.
It’s a confusing situation, I know. I got my feeding tube because I was sick and I got it removed because I’m sicker, not better.
Good thing, bad thing, whatever, but one thing this is not is an out of the blue spontaneous thing. I have spent many months contemplating this decision and considering all of my options. In fact, I have spent so much time thinking about this decision that I’m not sure what I’m going to spend all my time thinking about now that it’s out!
Okay back to my GI appointment last week. Once we decided having my tube removed was a good, reasonable decision, my doctor faxed a requisition to interventional radiology saying so, and all I had to do was wait to get an appointment. Easy.
How tubes normally sit
But my belly, even though it was getting what it wanted, couldn’t go down without a fight. I woke up on Sunday morning and I couldn’t stand up straight. My abdomen was in so much pain and everything hurt…moving, breathing, laughing, yawning, talking. I knew exactly what was happening because it’s happened many times over the last few years: my I-refuse-to-be-a-lady-in-waiting abdomen was trying to push out my feeding tube.
How my body likes to deal with tubes
By Monday afternoon the balloon holding my tube in place was wedged in the tract running through my abdominal wall which by the way is really painful. It hurt enough that I called IR to beg them to get me an appointment as soon as possible. Thankfully, when I talked to them on Tuesday they could fit me in on Wednesday afternoon. Phew! Only 24 hours to go!
Here comes a plot twist!
Later that night I noticed my tube inching out more and more. At first I panicked and started to shove it back in, but that was incredibly painful. Plus, it was scheduled to be removed the next day anyway. And so I pulled it out! It was disgusting and exhilarating all at the same time, and to be perfectly honest, I am rather surprised that I was gutsy enough to go through with it. Thankfully the next day was garbage day so that grosser than gross tube was taken right to the curb. So efficient! And I saved myself a trip to the hospital. Double efficient!
The pain relief was almost instantaneous! And less than 48 hours later my stoma is healing really well. All that granulation tissue that has been trying to heal that site for two years is now very happily living out that dream. As soon as it got what it wanted my abdomen shut up and calmed down. Leah and I compared the situation to the story of the princess and the pea, but a really giant pea. More like a potato. It was like the princess and the potato.
And that’s that. I don’t love the situation I’m in, but I do love that I am potato free. It’s possible I will have another feeding tube placed one day, but for now I’m happy to have one less thing to think about and a little more freedom. All in all, I’m left with a really weird story to tell and a really weird scar to show for it.
The end.
Finding my Miracle 
love the summary article
💕💓
I do not know if this is still a “living” blog but if it is, I just wanted to pass along to all of you beautiful warrior women how truly brave you all are. I do not have a peg, yet, but the decision to go forward with the procedure is definitely in my near future. Thank you so much for sharing.
Hi Lee! This is a “snoozing but still alive…I think” blog haha. I just wanted to wish you good luck with the decisions and steps ahead of you. It’s not easy, that’s for sure. Never give up on your quality of life – you deserve to feel as well as possible!
I love how you were most concerned about the trash going out! Your sense of humour is – well I was going to say wonderful but then follow it with ‘I feel like I’m reading my own thoughts in some of your posts’ which would make MY sense of humour wonderful and then I’m just bragging! I stumble on your blog from time to time and feel like we’d be great friends. I’m so glad you were able to make a decision, move forward and get relief from some of your pains in the process.
Haha well if you could have seen it and smelled it the trash going out would have been your top priority too 😉
Lady you are truly brave, truly beautiful, and truly a hero to those who may not be able to express their story the way you do. Bravo girl! And btw, you got a great figure, yay happy and healthy!
Thank you Darla 🙂
Hello my name is Christina and I have been battling gastroparesis with small bowel dysmotility for seven years now. I am on TPN and I also have a G-Tube, now I have had the G-Tube for about six years. My body is very funny about not liking things implanted inside, I have had many surgeries and for the past two years this stoma and G-Tubes have been so painful it has actually kept me in my bed! That is so crazy to me, I use mine for decompression as I have pancreatitis and make so much bile that I am constantly letting out bile and stomach acid. I hate when the tube’s balloon starts to pull up through the stoma, you have to walk bent in two, once I had so much pressure the balloon popped and you could hear it.
You were very brave to pull out your tube. I hope you continue to heal and your tummy feels better…. I am glad I Googled painful G-Tube in a roundabout way it sent me to your blog, so I don’t feel as if I am going mad! Have a good evening.
Cheers,
Christina 🐎
Hi Christina – yikes, sounds like you’ve had a tough go of it. Sorry to hear about all your pain and struggles! You’re definitely not going mad, these tubes can sure be a necessary evil. I’ve had a few balloons pop too – isn’t that the weirdest thing? Hearing this loud pop coming from inside your belly? Oh the things we put up with!
Wow! Good for you but OMG what a decision at the time. Such a brave thing to do. The instant relief is reassuring that you did the right thing. It is an example of what I mean when I say “The body has an amazing ability to heal itself.” Somewhere deep down, our bodies seem to know what is going on – if only our brains could harness it and get to the crux of the medical problems. Good for you for listening to your body. Take it easy and happy healing!
P.S. I am sad that your body is getting sicker. I wonder if one less foreign object will allow your body to focus on healing instead of fighting the foreign object. I have hope that you will find more answers this year. xx
Well that is our hope, too! That having this tube out will improve some other symptoms I’ve been having and let me body heal intead of fight. We shall see 🙂
Well done Catherine! You took control of the situation, enough was enough, chronic pain is the pits.
Thanks, Rosemary! It is the pits – you would definitely know!
Yeah!!! Good for u, you are gutsy!
Lots of luck to you!
Love, Val,
xo
It sound a bit like delivering a baby potato, I assume the balloon is the potato, I am surprise that you did not need stiches. The body is an amazing thing. So how do you know when you might need to go back to a feeding tube.? I have learned so much from your blogs. Thank you Catherine, you never cease to amaze me. Lise
Yes! Everyone has been really surprised about not needing stitches! They never stitch up the sites when feeding tubes are pulled unless weeks or months later it’s still not closed. Luckily, though, mine closed really nicely and I haven’t needed any gauze on my belly for days now! We would consider putting another tube in if either my symptoms were improving and it seemed likely that I could tolerate enteral feeds again, or if it became too difficult for me to get my meds in orally and I needed another option. Time will tell!
I won’t equivocate. Congratulations!