6 Months With a G/J

I don’t like it. I mean, I still feel a little betrayed by the surgery I had six months ago, to be completely honest. But now that enough time to pass judgement on the entire thing has come and gone- I absolutely do not like my G/J tube. Having a feeding tube is one thing, but they gave me the absolute biggest G/J tube they could give me (for one thing, so you can’t size up ever- how absolutely adorable of them), and for two.. The one tube exchange I have had with it was an absolute nightmare. I hope it was one of those things where “well, a new tube tract is always worse the first exchange..” and not “permanently this is going to take you out for a week..” because I am not in a great headspace with the tube and if that’s a truth of the new tube then I’m not going to be a happy camper.

This was the second surgery of my life that I woke up and something completely different than what I expected to be done was done, and: in both of those circumstances it’s an absolutely betraying feeling. I would just have waited or not gone forward had I known in both circumstances. They weren’t things which, once they got in, they had to be done without my consent because if they didn’t do them that way I would have died. They were just things that they decided mid-surgery to do or to not do, and it affected me afterwards. It’s hard to square that up when you consider how much effort it takes to heal from these things. Even worse is that, having Ehlers-Danlos Syndrome means the less surgeries I have the better, and both of these surgeries where the wrong choice was made cost me extra surgeries, extra healing, and extra trauma. It’s just hard. But back to this particular surgery.

At the consult- the surgeon really, really wanted to do a midline cut. And I really, really did not want to do an open abdominal surgery at the time. The reason why I didn’t want to do this is because open abdominal surgeries are incredibly difficult to heal from, incredibly painful, and the one I had before took me about eight weeks of laying flat on the couch before I could do anything upright at all again. I mean it was literally terrible. So I asked him if we could fix a hernia at the same time (It was from an ileostomy repair that didn’t go well) and has become a critical fix. He said that wouldn’t be a problem at all and not to worry about it. We might as well if we’re going in there since it would be since a big surgery.

Well, as if things weren’t slightly depressing enough with me having to emotionally adjust to having the wrong equipment in my body… I had a CT scan recently when I wound up having a kidney stone. And we left there feeling pretty good because I mean, it turns out that the kidney stone didn’t need surgery but a couple of days later we got a call after a radiologist looked at the xray and they saw the hernia in the same spot as before the surgery. Like, not that it broke or anything. It didn’t tear. It was just a comparison of this scan to the previous scan I had right before the surgery and saying it had gotten a little worse and I still need to get that repaired. I mean, I haven’t consulted a surgeon or anything. But it was kind of a critical repair in a bad spot before the surgery, and they were supposed to fix it then.. And I let them cut open my midline, and of course they hadn’t even touched it.

I feel kind of conflicted about this whole thing right now. I mean, on the one hand, they found out that I had an emergency strangulated intestine that they had to fix and the surgery was going on for a really, really long time, so did they run out of time? I don’t know. But if that’s the case, they sure weren’t upfront with me at all about it. They didn’t even tell me when I woke up or when I was being discharged. I mean not a single soul mentioned that they didn’t repair that hernia and that now I’m going to need to have to go through another abdominal surgery. I only just started feeling better. And I can’t imagine needing to spend even a single night overnight in the hospital again.

The even worse part is the pain where the hernia was from, I mean. It never went away, and I was thinking to myself “I guess maybe, this is just something I have to live with and move on with. I mean, I’ve had surgery for it, and if they fixed it I don’t want people to keep poking it.” I went to the doctor and they looked at me like I was a ghost when I said it still was hurting me. And if the only option was to like, reoperate or something that wasn’t really something I was interested in, unless it was for an actual repair. >.> But for pain management, it wasn’t enough pain for me to care. It was just enough pain for me to notice and go “Huh, so I guess the surgery didn’t fix the hernia pain, and that won’t go away.” Well. The hernia pain didn’t go away because, you know, they didn’t fix the hernia (on purpose) and we know that now so I guess the pain being there is not really a mystery now.

So I don’t know when it’ll happen and I honestly am not in even the slightest rush to go and try to get in with anyone. I just don’t want to constantly have surgeries. It’s stressful. It hurts. It sucks. I hate to sound like a freaking child but. I don’t want to go. >.> And to top it off, the new tube is just. It just sucks. I just hate it so much more than my J tube. I really do.

Hmm, I guess one more honorable mention is the numbness? I’ve had numbness from all of my abdominal surgeries, but this one was the absolute worst, much more penetrating and deep, and I don’t have any relief from it yet. Generally, by this point in the process (six months) I would have regained some of that feeling back, but I haven’t yet, so there’s a huge area of my tummy where I can’t feel anything. It very well could be my malnutrition, or it could just be something that takes a very long time. The numbness itself is so much worse and over a bigger area than the other surgeries I’ve had, and I know nerves themselves take a long time to come back.

Most people would probably not care about some numbness, and if it was over a small enough area maybe it would be okay- but… As a pet player I absolutely adore tummy rubs, and it’s something Master Pravus is always trying to give me whenever he’s rewarding me. I mean, like several times a day I get rewarded with tummy rubs. But, if his hand passes over the huge swath of my tummy that is numb, it’s so disconcerting to me that I pull away. I hate the feel of it. Going from warm, soothing rubs to a patch where I can’t feel anything. I hate it soooo much. He always asks me “does this hurt you?” and I mean. No, it doesn’t hurt. (I can’t feel it, it’s numb), but it’s disconcerting, and it doesn’t feel soothing or nice. So we’ve taken to tummy rubs on only half of my tummy, the half where I can still feel his hand. And I’m hoping that with time the numbness will dissipate. After all, it always has. Maybe it just needs more time to heal. Maybe it’s my terrible anemia. Who the spleesh knows at this point. But I hate it, and when I get rewarded half the time I get nose rubs instead of tummy rubs because I think Master Pravus is scared to set off the numb patch and make me jump. Maybe I’ll do an update in a year just to say if there’s improvement. We’ll see. Paws crossed, I guess.

I don’t want this to end on the grumpiest note of all time, so I’ll tell you about two things which have happened during the healing process which are both lovely and hopeful. One of them occurred when I was sitting in the bathtub playing with Shampoo Turtle. (A sort of, sponge shaped like a turtle for washing my head. Okay, maybe that was obvious…) Master Pravus was just staring at me, and I started feeling self conscious about it.

“What? Am I being too silly?” (I was just, kind of playing with it… Like, swimming him in the water a little.)

“No, I was looking at your scars. The ones on your tummy.”

And I told him that was making me feel self conscious, and I try not to think of my scars. And I felt my face immediately turning red, while I tried not to cry. And he said:

“But, Kitty. I was thinking, all those lines just prove how strong you are. You’ve been through so much, and you’ve survived it all. I have the absolute strongest Kitty there could be!”

And that pretty much ended me and I started crying into the side of the tub. Just ugly-cat crying, and not feeling very strong at all. But I realized- he’s right. All those marks that I think are so ugly. They prove that I’ve been through so much and I’m still here. I survived it. I’m stronger for it. I can push through regardless of whether I’m happy with the way things “are” or aren’t. I just have to keep going. That’s all.

And my Dragon said something I didn’t consider and nobody had ever said to me either. The scars have another meaning: that I’m still here. They literally mean: you’re still here to keep going and push through to fight another day. That I’m still here to be loved. Being brave is important, and a skill that I am not great at. But you can’t even try to be brave if you’re not here and I appreciate them so much for reminding me that the flesh is basically only the flesh and a few scars are not as important as my spirit. I am more important and more worthy than my scars. Both of my boi/ys have shown/ taught me that through this surgery and I am so grateful for that.

So yes. This surgery was a bummer. I hated it. I don’t feel like I’m in a better place after than I was before I went in in many ways. But, I do feel like there are some positives. I have my Master, I have my Dragon, I have the knowledge of what they didn’t solve. I know what needs to be done. I don’t really want to do it (ugh) but I’ll figure a way through it. And when I do.. THAT time. I will be in a better place. I will. I’m going to figure things out. I’m not brave, but I am determined, that’s always been my tagline. “The very determined Kitty.”