A Series of (Un)fortunate Events: Chapter 20: Biological Treatments

So in Chapter 19, you read that Imuran did NOT work out because I broke out in massive hives.  It was just bizarre.  I think my body just likes to think of new ways to fail at times...I'm thankful that I have a God that redeems and makes all things good.  I seriously don't know what I'd do without the hope in the Lord to redeem my story, this situation, and the awful mess that (at least I feel like) I am in at times!! 

So, to date, here are the things that I have now tried and were unsuccessful to help my ulcerative colitis:

EPIC FAIL #1:  Apriso--a low level pill that I took 4-a-day of that were supposed to keep my UC in remission, which did NOT work.  I had endless flare-ups on this drug before we made the long-awaited decision...IT'S JUST NOT WORKING!!!!

EPIC FAIL #2:  Imuran--2 pills a day; an immunosuppressant that helps people with auto-immune disorders/diseases. I, of course, had to be the one person to break out in hives after taking it.  Cool (sense sarcasm please).

Things that have worked:

#1--STEROIDS:  Steroids are great in the short-term but they have MANY MANY negative long-term side-effects (and for me they even had many nasty short-term side effects that pretty much turned me into a crazy person).  There have been times in the last 5 years that I have felt like (and actually) was ON steroids more often than I was OFF of them.  That is not a good thing.  My husband would definitely agree.  Bye-bye mood swings.


Enter Biological treatments...in my head, when I hear that phrase there is a collective {ooohhh ahhhhh} because it just sounds so fancy and sophisticated, and when the doctor first told me, I had ABSOLUTELY no clue what this meant. At. All. 

Basically, the doctor told me I would be taking a medicine called "Remicade (AKA-Infliximab)" intravenously.  (Seriously, if you are interested on the in-depth on HOW it works, please check out the link above by clicking on the word Remicade).  When the doctor first told me that I would get my medicine by IV, I was absolutely THRILLED!!!  I know you needle-haters probably think I'm crazy, but this meant that I would not have to put anything in my body through my colon (which, let's be honest, just NEVER seems to go well).  Period.  Ha.  Understatement.

What the doctor went on to explain is that it takes 3 hours to give the infusion and let it drip into my bloodstream (that's a huge time commitment to be sitting at the doctor's office which you have to do during business hours which means during the school day....), and it is EXTREMELY expensive (just to give you an idea: in the months of August and September, we've shelled out around $2,000 out of pocket and that's after Insurance has helped cover it's portion)!  Ugh. 

So we talked about it, and there was no way that we could turn it down and not at least try it out.  I'm so thankful to have a husband that is supportive and will constantly say "whatever you need."  He's a blessing and a reflection of the Lord's love for me!!!!! 

I went in that very day that they called because they had a 2:00 opening.  All of this started happening very quickly, but it was worth it to us ("us" being my support team--family and friends--you know who you are!!! :-)  What would I do without your support and prayers?!?  How can I thank you enough??!?

My first infusion was on Tuesday, August 6th, and it lasted almost 4 hours because they have to drip it in slowly to make sure you don't react. (This made sense to me after my recent episode with hives...don't get me started on those stupid hives again).  

My second infusion was on the SECOND day of school on August 21st.  That was really really stressful to me having to miss work for 3+ hours that afternoon.  I was able to coordinate it so that it was partially during my planning period, but I attribute that as one of the first times where I felt really overwhelmed because I already started out the year missing some of my PRECIOUS planning time (all you teachers out there, can I get an "amen?").  That just put me behind the next day...and so a vicious cycle began to start, whether it was all in my head or not.  I started to feel behind at school.  Anyhow...

 
I was even trying to work on school stuff while hooked up for all 3 hours, but I got only a little done without the use of my left hand.  Bummer. 

Here is a little snapshot from the Remicade website (credit: http://www.remicade.com/ulcerative-colitis/how-remicade-works)

Let's wrap this one up:

Here are the benefits of Remicade that I got from the website and also my thoughts as I read through the website before taking it that first time on August 6th:

• provides symptom relief--GREAT!!!
• provides lasting remission--Even better!!!
• heals the damage to the intestinal lining--WOW!!!  Get me on this DRUG ASAP!!!

Praise the Lord for NEW TECHNOLOGY that will hopefully help and provide me all these benefits...I'll update you on how Remicade has worked and affected me in my next post.

More to come!