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.
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.
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.