It all started a couple weeks ago when I was packing like a fiend. Things were going pretty good really and I was feeling alright. In the middle of packing, I noticed intermittently that I had a weird sort of sensation behind my feeding tube. It felt kind of like a stick poking into my abdomen right there. “That’s not right,” I thought. But, I usually only felt the sensation if I was bent over, and if I stood up it went away again. I figured maybe it was something to do with my body mechanics and I tried to be better about proper bending, etc. It seemed to help.
About a week ago, as I was lying down to go to sleep, I noticed that my feeding tube was actually throbbing. That didn’t seem like a good sign to me, but also I was pretty busy trying to get the move going and I didn’t want to think about it. I told Master Pravus about it, but other than that I just kind of ignored it.
Then, a whole ring around my feeding tube started to swell up pretty big. Like, it legit looked exactly like the time this happened (TW: Blood content), the only difference is the bit that swelled in this picture is off to the side of my tube, and the part that swelled this time is directly around the tube itself. Uh oh! At this point, I had no choice but to call Infectious Disease to try to get in. The only problem is that their first appointment was in two weeks. Weeks. I mean, in all fairness, COVID cases are making things pretty busy for them but when you’re sick that’s a long time. And in the meantime I started bleeding and having other problems from around the swollen part of the wound.
So, as much as I didn’t want to, I called up my gastric surgeon and asked for an emergency appointment so I could get this looked at. The last time something like this happened, I needed emergency surgery and I definitely didn’t want to wait too long. It’s not comfortable to sit through. Thankfully he had an appointment the next morning at 10AM.
I go in there, and he’s concerned. He says that yes, it’s infected. Yes, I need antibiotics, but also we have to move the feeding tube because it’s obvious the balloon is herniated outside of my intestines again, and until it gets fixed the antibiotics won’t be able to fix the problem. Ugh. I know he’s telling the truth, but I just don’t want to deal with it. He tells me he’s going to call down to the Emergency Room so they can get me some antibiotics, and get me into Interventional Radiology because I can’t leave my tube like this, it’s going to get worse and that’s dangerous.
So I exit the appointment, and as I do- I can clearly hear him on the phone. He’s doing his part and I think to myself “Alright. Hopefully this goes just fine. I really just want to go home with my tube fixed.”
We get to the ER, and it took two hours once we were in a room to see the doctor. And I mean, I get it! There are emergencies there that are probably bigger than mine, you know? Maybe someone was having a stroke or a heart attack. Maybe someone was in a car accident. I just had a feeding tube that was infected which could lead to something serious, but on its own it was just miserable but not… You know.. It wouldn’t kill me on the spot or anything.
I waited patiently to see the ER doctor. The ER doctor came in.
And after waiting patiently for two hours, he did no tests. Not one. Not even a blood test. Then he looked briefly at my tube and declared:
“Well, I can tell it’s not infected because it’s not really hurting you.”
>.< The downfalls of a high pain tolerance you guys. It hurt plenty, but I’m almost never in tears so nobody believes me. I could care less if they think I’m in pain, unless they’re using that as criteria to diagnose an infection. Good lord! Please, don’t pay any attention to the giant swollen pus-filled blob surrounding my tube then. At least without doing any testing at all you were able to figure this all out on your own.
So he opted to not give me any antibiotics at all. >.>
He did agree that the balloon is sitting right up against my abdominal wall and he called down to Interventional Radiology in order to see if they could squeeze me in that day to fix it. Obviously they need to get it fixed, he said, but there’s no infection he continues to insist. OK.
We waited around for a bit and it really did seem like they’d be able to get me into IR but then. (Guess what?) They couldn’t. I don’t really blame them. I mean, it’s not easy to get people in last minute for procedures that require anesthesia and so they set me up with an appointment to come back the next day. I actually was feeling pretty good about that, because Interventional Radiology is full of people who actually know about feeding tubes, and there’s no way they will miss my feeding tube infection. The Emergency Room only missed it because
- They didn’t do any testing at all.
- They don’t know squat about feeding tubes.
- I never have good outcomes going to the ER with a feeding tube. I literally wouldn’t have gone if my doctor didn’t send me straight from his office. >.<
Right before we left though, he came back with a HUGE roll of tape and insisted that he tape my feeding tube down to my belly “So it doesn’t come out.” I tried to remind him that I have literal pus draining from my tube, and it’s swollen and incredibly painful and that will make it so much worse. I pointed out that with tape on it, how will it drain? He insisted and said that if it comes out because I wouldn’t let him put tape on it, that he’d put the tube back in with no sedation in the ER. I really felt that threats were over the top and unnecessary. It was so stupid. Master Pravus and me were both so angry about it.
There was one other time that I insisted that I had a feeding tube infection, and I got sent to IR without antibiotics and the infection just blew up really badly. Badly enough that I needed major surgery and to have my tube moved to another location. I really hope that doesn’t happen this time, and I think that’s what my doctor was trying to avoid by sending me down to the ER first. No such luck, though. So here we go again, only this time- I have a massive swollen area and it’s way worse than that other time. I just hate how this is going. Tomorrow I go to IR. I hope when they tear this tape off that things aren’t as bad as we think they will be. But, the tape is definitely not making things feel better, and it was so unnecessary.
I’ll update with part two after I go to IR (tomorrow).