Entyvio Part One


So after being sent a bill for $29 grand and many phone calls with my insurance company and financial assistance, I received my first infusion today.  I honestly was really dreading it to be completely honest, I had heard about bad infusion reactions (not longer term side effects) and seeing as how I seem to get every side effect to every drug… It made me nervous.

Apparently, I was right to be concerned. Right after the infusion I felt like I was tired. Halfway home, the fatigue was bad enough that I didn’t want to drive anymore. Shortly after that, headache.  You know, the ones that border on a migraine.  As of a few hours ago, bad joint pain.  I hopped into a support group I joined, specifically for people on this drug and asked.  I guess this does happen and as I had already heard, it lasts a couple of days.

I guess I’m just grumpy about it.  Think about your worst hangover, multiply it by 3, and make sure it lasts.  I get so irritated by the fact that some of the medications I take have more side effects than my Crohns Disease does symptoms.  At least beyond these loading doses, I’ll only have infusions every 8 weeks, but boy is this going to suck in the meantime. 

I really hope this drug works, and works long term.  I could use a break in my medical life… everything else is great, just need my Crohns Disease to get with the program.




Some habits are hard to break.

No shit right?  I am such a creature of habit that I hurt my own head sometimes.  I’ve slowly but surely been breaking the bad ones, one at a time.  The more habits I destroy, the more confident I become.

Yes, I still smoke, I’m still working on that.  After 13 years, it’s a tough one.  So I’m slowly pushing at it and will eventually win.

In the meantime though I’ve given up quite a few.

I used to eat fast food at least once a week or once every other week.  I admit, it was easy to just stop at McDonalds after a long day of work and get a quick dinner for me and the short one.  I didn’t realize how often I was eating it until I actually sat down and looked at my checkbook register one day.  Yeaaaaah.  No.  So I stopped.  As a family we *maybe* buy fast food once every 6 weeks, if that.  Seriously, try it.  Whenever we do stop, even just junk food at a sit down restaurant, or a delivered lunch to work, I’m shocked at how much my body revolts afterwards.  I’ll feel sluggish, greasy, tired and slightly sick.  Every single time.

Once we cut that down, I started with more (in season) fresh veggies and fruits instead of canned and processed.  I’ve always prefered to eat fresh, but always felt exasperated in the Winter and Spring.  Well go figure, if you eat what is in season in your area or close by, it’s a lot easier.  Meals are a lot more fun to make now, and I feel better after I eat as well.  Since we incorporated more fresh veggies and fruits into our diets I have also noticed that Noodle complains less about her stomach and has an easier time with her moods as well.  Related?  I’d like to think so.

So one thing I’m working on that will shock the hell out of everyone and their mom is coffee.  No, no, no, NO.  I’ll never cut coffee completely out.  I love the taste of it, the comfort that I’ve attached to it over the last decade or so.  Coffee is soothing to me, helps me clear my head.  I enjoy it.  Not to mention the health benefits of a cup of good joe.  However, y’all know, left up to my own devices I can easily drink several pots a day.  As I’m getting older I’ve noticed the caffeine hits my body harder… and more importantly hits my crohns as well.  So I’ve been substituting tea in where I can.  Some with caffeine and some without.

With my Crohns flaring (again), I’ve started drinking more Lemon, Peppermint and Ginger Tea and to say I’ve noticed a difference is an understatement.  A bit of iced green tea is a good replacement for my iced coffee on lunch.  My stomach (while still trying to claw it’s way out) is much easier to manage, and the anti-inflammatories from the tea definitely seem to be helping me tolerate solid food quicker than usual.  The Guava-Ginger tea I picked up at the market, and the Ginger-Lemon I’ve been drinking for a couple of weeks calm down my stomach quickly.

There might be something to this natural crap.  *smirk*  Hey, anything’s worth a try after you live off of drugs that CAUSE CANCER.  Don’t get me wrong, I don’t believe that I’ll ever live med-free (for long anyway).  I have severe Crohns Disease, and it has me by my non-existent balls.  However, I’ve made it a personal goal to stay off the prednisone and 6mp because of what they did to my body the last time.  Maybe these last few strides to improve my lifestyle will give my body that last kick it needs to get into remission.  Who knows.

All I know is that regardless of whether or not I have surgery to remove the fistula/strictures, this lifestyle is here to stay.  I’ve got to give this body a fighting chance, so why not?