About Ulcerative Colitis · Treatments

Humira & Me: My First Experience

Warning: explicit language and lots of details about poop (no surprise)

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Yesterday was Humira day. Can you believe it? It all happened so fast.

Let’s rewind a little bit here.

So like I said in my last post, our choice was to start with Humira because it just seemed like a better fit for my lifestyle right now amongst other reason. Currently I am still working so by going with Humira it allows me to be able to choose what day (kind of) that I start it and I can do it at home.

So after my conversation with my nurse practitioner I started thinking, hey this is it. Once you start, you don’t really get to stop. And this is a lifetime commitment or at least until it stops working. Am I ready for that? At the time all this was going on I was actually starting to feel better, especially after my weekend from hell, so I was having a really hard time wrapping my head around all this urgency to get started and all this need to get on it. I was starting to feel okay. I mean I still had my really bad joint pains and other symptoms, but I could handle this. I started feeling a little apprehensive about maybe this not being my best choice and maybe seeing what other options I had.

Now it’s Wednesday and I get a care package from Humira delivered to my house. Super helpful and normally you get it before meeting with a nurse so that you can review all the information and start thinking of questions you may have. In it is information packages, injection tracking information for yourself, a travel kit (with little cold packs included), your sharps container, and a practice pen (I chose the pen not the syringe, because I’m a baby and can’t look at a needle inside me when I do bloodwork) so you could see how it all works. The little shoulder bag is what it all came in!

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Again, reality is slowly settling in that this is it. I was still on the edge because I didn’t feel that sick and I was worried this would just all make me feel more sick again and then what? But my body I guess decided it had enough of me being on the edge of agreeing to go through with this, because it decided that night it would show me WHY we need to be on it.

Like I said, I felt good earlier this week. Good enough that my boyfriend and I actually went out to eat and shop, which I haven’t gotten to do much of since I have been sick. It was exciting! We were browsing around Home Sense and out of no where I just started getting really hot. I figured it was because I was still wearing my jacket and I had been in the store for 20 minutes already. Then in the middle of the aisle I had this overwhelming sensation that I was going to poop right then and there. I was back to my old cramping before I went on Prednisone. I fell to the ground so fast trying to clench my butt cheeks together and decide if I had the strength to hold it until I found a washroom or if this was going to be an accident that happened right now. Bless my boyfriend’s heart for going down with me and pretending to look at napkin holders so that it didn’t need to look like a public scene. I managed to hold it until we made it back home, but my god was I punished.

My whole body just convulsed. I was shaking, I was hot and cold all at the same time, the pain was indescribable, and then when I tried to reach for the toilet paper my shoulder decided that that would be a great time to have a joint pain episode.

So there I was on my toilet going through all of this, when a hour earlier I felt so good. I cried. I cried hard and I finally just said, fine body- you win. Biologics it is. Because I can handle joint pains (for the most part), I can handle the gas, the foggy muddled head, the sleepless nights, etc. but I cannot handle my old flare up poop attacks. And I knew what I had just experienced wasn’t even the worst of what it once was. I had forgotten how bad they are and how it’s literally a whole body process just to poop!

So now we are on Friday, where at 12pm I had an appointment to meet with my nurse to learn how to inject myself. I was so scared. I hate needles. I will do them, because I know they’re necessary but I do not like looking at them. It’s gross to me. And I had no idea what to expect. Could I drive after? Would it kick my ass right away or be gradual? Would I feel nauseous? So many what ifs here! And you know it will burn. Everyone kept telling me that, so then you start wondering how much will it burn? On a scale of 1-10?

But the good news is that it wasn’t THAT bad. It definitely was not the most pleasant experience and not what I would want to be doing with my day, but it was tolerable. The nurse sits with you and goes through everything. Like I mean everything. I had a 12 page info packet we went through. Then she shows you the procedure. You sterilize everything and yourself. How to prep, where to inject yourself, all of that fun stuff. Then it came to the actual needle time. The pens are pretty big looking, so that threw me off a bit. She asked me if I wanted her to do the first one, which I replied obviously. I didn’t know what to expect when it came to the “burn” so I would rather experience that first so I know what will happen when I do it on myself. So we sterilized my tummy and she injected me. I swore. I harshly whispered the word mother fucker and she laughed because I look like this dainty little thing, but I have a trucker’s mouth somedays.

The burn!

It’s not quite like the Gardisil shot if any ladies out there have had it. You don’t feel it travel down anywhere, but you feel the burn right away and it lingers for 1 minute or so. It’s like a very intense pinching pain and you have to hold the needle down for 10 seconds. This became my kryptonite because your automatic response is to relieve the pressure, not press down, but if you don’t press down you bleed so much more and it bruises a little bit.

I managed to inject the 3 other needles myself. For me, tummy hurt a lot less. When I had to inject my thighs I swore both times because it fucking burns and hurts. Apparently it’s because there’s less fat on your thighs. But I stayed 30 minutes after to watch for allergic reactions, didn’t have any and all my vitals were good so I was good to go home! Just like that! I felt fine for most of the day. I was able to finish my work day with no problems, went out for dinner and ate my usual prednisone amounts (which if anyone is wondering, it is definitely above my normal amounts), then even went to a concert and thought “Hey this isn’t so bad”.

But you do crash. My crash came 10 hours after the shots. It’s not terrible and to be honest I don’t know if it’s the Humira or the Prednisone or both. But halfway through the concert I got a really bad joint pain in my legs (the whole body convulsing in pain as it shoots down and public crying) and then I got really painful gas. There was mucus associated with the passing of gas so I kept feeling like I needed to run to the washroom. And the gas was aggressive! My poop attack came this morning and it was pretty painful. I cried (god I cry so much now). I also got pretty tired last night. I just felt really run down by the time I made it home and crashed (bonus-it was mostly the best sleep aside from waking up to pass gas).

Today I still feel pretty run down. Sluggish would be an appropriate word for it? I also feel a little achey. Like a whole body sore instead of a joint pain sore. I’m super thirsty all the time. But I have’t lost my appetite! I ate dinner last night and then an hour later inhaled a soft pretzel like I hadn’t eaten for days, then came home and snacked. This morning I woke up starving, so hopefully this stays because I don’t want to lose weight! The gas is still in effect though. I wonder how long that will last?

I’m really hoping this all goes smoothly, but life never works out that way. And I work with children, who are snotty, germy little monsters. Not the best thing to be around when your body is being compromised and your immune system becomes shot. We will definitely have to see how that progresses. I was told I may have to consider taking a leave of absence from work because of that. They take any little sign of being sick super seriously, so be cautious with that if you are considering biologics. Every time you inject yourself you have to ask “How am I feeling today? Do I feel sick? Do I have a sore throat? Do I have a cough? Do I have an infection?” If you answer yes to any of these, you have to get checked out first and then call your program and let them know to see if you can even give yourself the injection that day.

But I will keep you posted on how I progress! My next round of shots is in two weeks and I’ll be doing it on Saturday instead of Friday. My goal is to do them Sundays because Sundays I typically don’t have any plans and they prefer you to do them on days that are predictable and less hectic incase you crash. Fridays are my busiest days usually, but the nurse couldn’t meet me on the weekend and I had to get it done this week. So now I have to slowly progress to Sunday. So two needles on Saturday in two weeks, and then after that 1 needle on the Sunday in 4 weeks!

Here’s to hoping it works and for anyone who has to start Humira, I promise you it’s not as terrible as it seems. I am a big chicken, especially with needles but I was able to do it. It definitely helps having the nurse do the first one for you so you know what kind of pain to anticipate!

Have a great weekend!

 

xoxo.

 

Bee.

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