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My First Infusion Experience | My IBD Diary

Warning: This post will contain medical content- lots of needle talk!

Disclaimer: This is just my personal experience. It is different for everyone.

My Infusion Experience

With that out of the way, I’m going to talk about my first infusion treatment for my severe ulcerative colitis. I was only recently diagnosed, the “severe” part of the diagnosis is what got me to this stage of treatment faster. I’m only 18 and still babied, so my mom was with me the whole time as she normally is to deal with all the technical details.

First, I was sat in a room. Kind of small, but there was a tv and a giant comfy chair (for me) and a side chair (for le mama). The nurse introduced himself, asked questions about the sheet I filled out in the lobby (recent symptoms type thing) and reviewed which medications I would be given. There was a mess up at the pharmacy and apparently none of the major medications I was there for were prescribed and ordered. This was taken care of as fast as possible, which meant sitting and hanging out for 45 minutes while we waited for the medications to arrive.

Blood Work

I had to have my blood taken for labs (this will happen each time before the infusion to monitor my healing) and this was by far the most stressful part. I was given medicine in pill form first- tylenol, benadryl, and an anti-anxiety med (which didn’t work) to get them in my system in case I have a negative/allergic reaction to the infusion. Being a needle-phobe, I don’t want to see the needles. I’ve come to terms with that fact that I’ll have to be in contact with them a lot, but I still need to take anti-anxiety medication and hide my head in my mom’s chest. Not going to lie, this was the worst blood draw ever. I’m typing this quickly to get it over with, so pardon bad phrasing. It hurt. The idea was to stick me one time, use that as the port to draw blood and then do the infusion. Only problem is, I’ve lost a ton of weight and I’m also very low iron. This means that my veins don’t cooperate. The needle for the infusion also hurts a fuck ton more than the normal ones. Excuse my language. I could feel it. And I mean FEEL it. After several attempts and really really unpleasant never-before-felt digging (shudder) they called a specialist down for the blood draw. While she was on her way, I requested something- anything- for my arm with the infusion needle in it. I was then given a warm blanket to wrap it in which did help, but also got it out of my sight. ¬†The blood work specialist was fantastic, got it in one go. I told her I loved her.

There was still a needle in my other arm from the male nurses work because it was a good spot of the infusion, it just wasn’t giving any blood. It was unpleasant and I could feel it there the whole time. This was difficult, but I got through it with some meditation and nervous chatter with my mom.

After all of that, it was easy sailing. The nurse hooked my arm up to the iv drip, told me to tell him if any negative signs that he listed off occurred, explained how it was going to work.

During the Infusion and After

I watched an episode of Sherlock on Netflix with my mom while the infusion was actually happening… an hour and a half later, I was done. A different nurse/lady/assistant person came in and disconnected me. The spot where the needle was hurt a lot- really bad bruise kind of pain, and I was tired. The lobby was empty, hardly any nurses were around when we left.

We went out for burgers and then went home. Here’s the incredible part- only my arm hurt. This is so unbelievable because for the past few weeks, my colon had been in pain. On a scale of one to ten, it was consistently at LEAST a seven. I felt like dancing. I had forgotten what no-pain felt like. Not only that, but my appetite was back after being gone for a week. I was just a bit tired like I had had a long day at school and maybe not enough sleep, but WOW was that a pleasant kind of tiredness to feel.

The day after, I could feel my colon and feel it trying to start healing, but some of the extra medications they had given me to prevent allergic reactions were still in my system and working for the better- I felt incredible.

The next day (two days after) I started out feeling pretty good, but then the extra anti-inflammatories wore off and my body started trying really, really hard to heal. My pain was still significantly less than before the infusion, but it was there. I was also exhausted. All my energy was going to healing- this meant multiple naps. Not too bad.

More updates to come, I hope this was informative to those who needed it. Leave any questions in the comments!

Thanks for reading,

Q

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