Dealing with Crohn's

This morning I captured through Twitter the experience of receiving a Remicade infusion. I collected all of the tweets together into this one post. They are listed in proper order from earliest to the last one. I thought it would be cool to pull them together. Remember each post is limited to 140 characters each.

I was going to capture my Remicade treatment through photos and then turn it into a comic book, but the battery went dead.


So I've decided to share the experience through Twitter. I've already made it to the VA hospital, checked in, and now I'm waiting.


I've got to wait while the pharmacy prepares the different cocktails of drugs they are going to pump into me this morning.


I have to do this every 8 weeks to keep my Crohn's Disease under control. This is what is called maintenance therapy.


I'm in maintenance therapy because they haven't (hope, hope) found a cure for Crohn's. Remicade is an immunosuppressant.


The current theory is that your body attacks your intestines, just like it might any foreign body it found inside your body.


While waiting, I took the opportunity to grab a little breakfast, now I'm back to sitting around.


The Remicade is supposed to reduce my immune system's response, which scientists believe are the cause of the inflammation in my intestines.


Just called me in to the laboratory room to get settled.


Well I'm all set now. They put in the IV line and connected me to the EKG to monitor my vitals. They've got a saline drip started.


I've also got my iPod set to jam out to Metallica's Death Magnetic throughout the procedure. Later they'll start the pre-meds.


Forget to mention that Remicade is done through an infusion, not an injection. In all it's about a four hour process.


The pre-medication consists mostly of Benadryl which helps prevent an allegeric reation to the Remicade.


The Benadryl usually males me pretty sleepy, so after the pre-meds start I usually go under. I wake up every now and then.


So I hope to get a few updates out after the Remicade starts.


They just started the pre-meds. The other is Solu-Medrol to help fight inflammation, in case of an allergic reaction.


It burns my arm a little.


Pre-meds are in, and I'm started to feel little buzz. A little light headed, but really it's a small little treat. Starting to get drowsy.


Oops, it was the first one that finished, now the second one is dripping in.


Funny taste in my mouth and a little dryness too. It must be Benadryl.


Forget to mention that this all takes place in a hospital bed/gurney. "Bow down!"


I finished the second pre-med. Man once the meds start to flow I always feel so cold. I have a nice blanket and jacket to help keep warm.


They started the Remicade infusion, which uses a pump to infuse the meds into your blood. Not too drowsy yet.


The nurse overheard Metallica and chatted a little about the upcoming concert.


Trying to relax, to see if I'll get drowsy. Maybe the tweeting is keeping me alert. I hope not because sleeping helps the two hours pass.


"What don't kill ya, makes ya more strong!" Readings from pump: Infliximab 8.89 mg/kg - 125


How long was I out? I guess I was able to relax enough to fall asleep. Looks like I still have about half left.


I've listened to Death Magnetic twice now, so I'm switching to Metallica's S&M. Oh yeah!


I'm starting to have the urge to urinate, With all the liquids going directly into my blood tend to fill my bladder rapidly.


Still about an hour left, I think.


Beep! Beep! Beep! That's how the pump informs us that the bag of Remicade is done. Off with the monitors and I'm done.


Still not done yet. After collecting my things, the first stop is in the bathroom to empty my full bladder.


Now I have to eat a little snack. A plain ham and cheese sandwich and some grape juice. It's so dry I dip it in the juice so I can swallow.


Finished the snack, but I still have the IV line in. I'm feeling normal, so everything seems to have went well.


They pulled out the IV, checked for my pending appointments, and I've been released. After a while I'll start to feel run down.


It's like blah. I guess it must come from my body absorbing the Remicade. I'd compare it to chemo-therapy, just not quite as nasty.


Waiting here in line to get paid for my travel expenses; I'm feeling a little sick to my stomach. Could be I need to go to the bathroom.


Heading home now....

Next time, I'll make sure the battery is fully charged on the camera, so I can try to capture all of the images needed to reproduce the experience in comic book format, except using photographs. At least I have most of what I would need to write the script from this tweet record.