I have been anticipating my infusion the last few weeks as I felt the Entyvio wear off, my urgency increase and some irritability ensue. I called my infusion center hoping for an earlier appointment and luckily, I was able to get in the morning before. I put it all together that something was wrong when I was sitting at my desk last week and felt my chest start to get hives, which happens when I am anxious occasionally (and is sometimes a result of not being able to find a bathroom). Then I realized, I haven’t quite lost that Crohn’s feeling, it was actually creepin’ back in.
One Crohn’s related symptom that has taken some residency in my life and not gone away with treatment is my joint pain. My knees are the worst and it occasionally breaks my spirit, because I miss running, I miss working out with weights, and I miss yoga sculpt. Now, I sometimes feel like my knees might just give out mid-walk, then other times they are totally fine and I go days not thinking about them. I get really stiff, especially when we have immense changes in weather like we have recently – those days are the worst. So, I am giving LDN or low dose naltrexone a shot to see if it helps with my overall symptoms. I will keep ya updated on that one as well.
[ Enter Positive Vibes ]
Everything started out on a great note, shout out to the nurses who are incredibly accommodating and do a great job over at my infusion center! It can be somewhat difficult to find nurses who consistently get the IV started on the first stick and they have nailed it every time so far …. and they bring me snacks. Nothing against nurses at all, I think this is one of the most difficult parts for them because we are just staring or panicking as they do try to locate the best suited vein.
As far as symptoms/side effects go – during administration I felt the dull headache start to set in about 40 minutes into the hour long treatment and also started to feel a stinging sensation in my arm as the medication finished up, but it was fairly mild. After the saline solution was finished, I tried to assess how I was feeling and how the rest of my day was going to go as a result. I drank another bottle of water and realized I was feeling hungry (!). I was so thrilled because it can go a few ways – I don’t eat at all that day, or I am really hungry and then get nauseated immediately after eating or like yesterday, I feel pretty much fine.
Here are some other reasons why Entyvio treatment 4 Day was great: (1) Alex drove me to work, (2) he stopped and got me a donut from my favorite bakery Firecakes on the way, (3) I made a awesome curry butternut squash soup the night before (which I will post later this week) and it was even more delish to eat the next day, (4) Blick Art Store is having their back to school sale. You will hear more about those hobbies that the Blick store feeds later this week, but the point here is that I always find a way to treat myself on treatment days. On this particular day, it was a new set of Staedtler fineliner 0.3 point pens and a new sketch book.
When I was first diagnosed, I started on Remicade, which many of you know is another biologic infusion therapy. It is similar to Entyvio in administration and also regarding the side effects I personally experience, however, their mechanism of treating the disease is different.
I was only 17 years old when all of this started. My family had no prior history of Crohn’s or anything like it, so you can imagine what a shock it was to them. We were offered a few different options to start treating Crohn’s and the one that included Remicade seemed like our best shot. My mom (whose birthday it is today! You will also be hearing from her soon, too) went to every Remicade infusion with me until it stopped working and we had to declare it ‘failed’ because my Crohn’s flare wouldn’t stay away long enough between treatments to achieve remission.
One thing I will always remember is that my mom made sure to always do something with me after. Looking back, I must’ve used up all her vacation days… sorry, mom! While I usually chose going to a good lunch, she would always make an effort to have that time set aside where we did a ‘normal’ activity that was not related to Crohn’s. She never told me this, but I am now seeing what she did years later. It made me feel good. It made me feel normal for a minute after treatment.
I started Entyvio in May – I am now 10 years older and my mom can’t go to every treatment with me, so I immediately reverted back to what made me feel good before and carried over that behavior to my infusion schedule today. I really do believe it is important to treat yourself. It doesn’t mean you have to buy something expensive every time you have treatment or go for surgery, but do something you want to do that makes you feel like you. It works for me, at least. So, this is why I bought new markers and a sketchbook – it is something I enjoy and it is mine. It has nothing to do with my condition.