[Image shows 3 spoons on a laptop keyboard. Overlaid is clipart of white notebook paper with a red paper clip. On the paper in black text reads “Health Update: ER Trip and Entyvio Round #4”. At the bottom of the banner in small red text is the url for Thee Crohnie Grace Blog.]
Last Sunday, I took a trip out of town with some friends for the LARP I do. My tube had been clogged for a while, but wasn’t a huge deal, I had already scheduled to get it replaced on the 17th. But once we got to our destination I noticed something weird. At first I thought it was just stomach acid backing up into the tube, and that maybe my NJ was just forced into my stomach, I just went to the bathroom and rinsed it out; normally I would have flushed it but since it was clogged or kinked I couldn’t push fluids.
Soon though I discovered that it wasn’t stomach acid backing up, it was feces. I sent a message to my mom who then called my GI Nurse. I was just going to pull the tube and continue my event with my friends, but my nurse told me not to pull it due to the risk of getting stool into my stomach and getting E. Coli. Instead she simply just told me to go to the ER so that they could try to push enzymes to unclog it, clean it out and then pull it if need be.
I was just going to wait til I got home from my trip to go, I figured there wasn’t a huge rush or emergency really, so long as I didn’t try to pull it on my own, the tube wasn’t going anywhere. My traveling companions though were worried, and insisted we go home anyway, which while extremely kind of them I couldn’t help but feel as though I had messed up our trip over what seemed like a small problem to me.
They assured me though they didn’t care and just wanted to make sure I was okay and taken care of. Insisting on updates when I got to the ER and whatnot. So once we made it home, my mom came by and picked me up to take me to the ER.
What I imagined would be a long wait was not at all, they took my right back and had a doctor there to see me within minutes. He called the pharmacy and ordered pancreatic enzymes and ordered a X-Ray to be done to see where the tube was.
They also made note of the fact I was really tachycardic and had a low BP so they wanted to go ahead and start me on fluids anyway. I pointed out that I had a port, and they went to feel for it. The nurse said she could only feel one ball, when she was supposed to be able to feel three. She brought in two other nurses to feel, they all agreed the port was too tilted and possibly flipped and could not be accessed and that an IV would be needed instead.
For a good while I had gotten extremely good about IVs, I let them stick me 5-6 times and would not cry or get upset. But since my previous Entyvio infusion where the nurse pinned me down when I told her to “Stop” because she had missed my port and was digging around with the needle in my chest which hurt, I had a case of what me and a few other chronically ill friends call “Medical PTSD”.
I found a song to listen to and squeezed my mom’s hand as the nurse tried to find a vein, in my least favorite place: my hand. She got the vein but there was no blood return, which made me panic when she wanted to push fluids. I went into meltdown mode featuring me crying and flapping my hands around. Luckily, my mom advocated for me and said, “When she says stop, we stop until she calms back down.” And the nurse was extremely patient with me until I relaxed and settled down and she was able to push fluids through it with minimal pain.
[Image shows my hand/wrist where an IV has been placed and taped down.]
They started me on fluids and waited for the results on the X-Ray and to hear back from Pharmacy on the enzymes. The X-Ray showed that the NJ tube was still properly placed. So they got the Enzymes and started flushing out my tube. It flushed easily, and he told me he thought the clog was gone and that since it was flushing good now that he wouldn’t remove the tube and wait til my appointment with the radiologist to get it replaced, since the tube has caused a bunch of issues.
They wanted me to stay still though to get fluids for the tachycardia and low blood pressure. So I waited patiently for the bag to empty.
[Image shows a bunch of utensils in the ER room, including a bag of fluids hanging up, a monitor and a bunch of other things.]
We were free to leave afterwards. Of course with the port being unusable, I had to contact my doctors to contact the surgeon who placed it so that they can come up with a plan to either flip it back over or replace it. They have yet to get back to me with a date for that. Which meant that when Friday came around for my Entyvio infusion, I had to do it all over again.
My Grandma took me to my Entyvio infusion. The same nurse I had this time was, apparently, the same nurse who messed up my port and led to my panic over needles once more. I had been hydrating all night and day through my NJ tube so that finding a vein would be easier. I had brought headphones so I could listen to something to distract myself as she tried to start an IV. Despite being awful at accessing a port, she did an okay job at getting my IV started.
[Image shows my arm, IV accessed in the crease of my arm and taped down, and then wrapped to my wrist featuring the top of my crystal tattoo]
Luckily the Entyvio infusion is a short one, the longest part was just waiting for the pharmacy to send the medicine. I finally got a call back from my doctor whilst at my infusion. She said that she would call my mom to schedule me to come up to Cinci, cause they would have to have VAT try to access my port, and then if not possible at all, fix it or replace it and then they would want me to stay a day or two, like they had me do the first time it was placed.
Next week I start college, I also have an Echo, get my NJ tube replaced, and hopefully will have a more solid plan on what is going to happen with my port. Never a dull moment.