Friday, January 31, 2020

Humira : Day 29

Honestly, I don't see any difference between Remicade and Humira.
I don't feel any different.
I don't look any different.
The only real difference is time.
With Remicade, I had to drive out to the clinic to get infused, get the infusion and then drive maybe 3 hours total.
With Humira, I take it out of the fridge to warm up a bit, then inject... so maybe 20 minutes total.
Also with the Humira, I don't even half to have a shower, get dressed, eat breakfast...nothing.
I do though.
BUT... I don't HAVE to if I don't want to and that's a bonus!!
If I showed up unshowered and naked to the infusion clinic, I think I might be sent home...
 or arrested 😆

Thursday, January 23, 2020

IBD Support Groups

I must confess, in the 32 years I have had crohn's, I have never been to a IBD support group. I never thought I "needed" it, so I went through everything on my own in a sense. I had/have family and friends and now a growing online community to vent, but never a sit down, face to face meet and greet.
I'm an introvert and have trouble speaking in public especially if I don't know anyone, even though we might all be going through the same thing.
Now, having said all that, I received an email from Crohn's and Colitis Canada (like I always do), letting me know of a meeting for the Fraser Valley West Chapter , which is my local chapter. I thought this time maybe I'll go.  I mean, what could it really hurt? On the night of the meeting, I got up the nerve (and a little push from my wife) to drive out to the meeting and see.
It was in a nice meeting room in a library and as I walked in was greeted very nicely by three people already there, one of which was the Chapter president, Hailey. In total, there were 8 of us sitting around a couple of tables and it was obvious to me that I was the odd man out. Not in a bad way, but it became more aware to me that all these people have met before and for some time. Hailey started with introductions where everyone introduced themselves and a little about them as far as IBD was concerned. I said my name and that I had crohn's for 32 years and I don't think I said anything after that, I don't remember. Pretty lame, I know. Others went into more details and after hearing everyone, I'm thinking, "I should have said that, damn it!, I've had lots of surgeries too". LOL
I'm not great with speaking in public, only the written word I guess, but I made myself a resolution that 2020 was going to be the year I try and meet up with other IBD or chronic illness people.
The meeting was 2 hours and by the end I was feeling more comfortable and everyone thanked me for coming out and nice to meet me which made me feel more comfortable. I chatted with a gentleman on the way out about his experience with an ostomy as he is fairly new to it. If my crohn's gets any worse, an ostomy is the next step. Something to think about as it is always on my mind and the psychological aspect of it is hard for me.
They meet every third Tuesday of the month so I marked it down on my calendar in the hopes that maybe I'll attend again. Nice group. Maybe I'll open up a bit more as each meeting comes and goes, but there is only one way to find out.
So, the point of this post?
Don't be like me and wait 30 years to go to a group meeting.
If only just to go out and meet with others like you.

On a side note, thanks to the group for the feeling of being welcome.

Friday, January 17, 2020

Humira : Day 14

Well, so far so good. No problems. Pretty simple injecting myself. All's good!

I was a little surprised at the box that arrived to my house, though, the day before my injection.
I was expecting a little package, but it came in a large box. Inside the box was a large white Styrofoam cooler.
When I took off the lid, there was several frozen gel packs covering the two boxes of Humira.
I took the boxes out (I had to do two injections this time and then one in two weeks and another two weeks later) and there were more gel packs!
I checked out the Humira pens to make sure they were ok and put the gel packs back in the cooler, sealed the box back up, affixed the return label and called the courier to come pick up the box to return to the pharmacy.
Seems like alot to do, but still alot easier than driving half an hour to a clinic, spend and hour sitting in a chair to get infused with Remicade.
Ahhh, Remicade... my long lost friend, I hope your cousin Humira works as well as you did for me.
I did some calculations and one of my injections will be while we are away, so I am going to have to take it with me. I was hoping to avoid it, oh well. 

We gotta do what we gotta do

Friday, January 3, 2020

Humira : Day 1

Well, I'm giving Humira a go this time as the Remicade stopped working for me. My body started to become immune to the drug. It's too bad really. Remicade was a "god send" (if there is such a thing). It worked miracles for my symptoms and took most of my problems away, but the disease lingers still which was prevalent during my last colonoscopy. I never expect that it will ever fully disappear, but comparing colonoscopy results a year apart proved that the Remicade was not working anymore.

So, my Remicade lasted 2676 days, or 7 years, 3 months and 28 days.

I had my first 4 Humira injections yesterday, so I am at day 1.
I went to a clinic for patient instruction as I have never injected myself in my life and I never thought I couldnt do it, but wanted to make sure I did it properly. Better safe than sorry. They wanted me to wait for about 30 minutes after the injections to monitor my blood pressure, etc. just in case, but all's good.
I will do my next injections at home now. I have 2 injections in two weeks and then maintenance dose of one every two weeks.

Fingers crossed.....