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?