#TheSWELLlife Volume 2

Updated: Jan 23, 2019

May 14, 2016

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Jen Hartnett-Orser

SO much to update!   I would be remiss if I didn’t begin with a MASSIVE THANK YOU to all the peeps who have called, texted, FB’d, visited and otherwise checked in with, and sent me support, prayers, hugs, hearts and love.  I felt all the feels with each one.   Seriously…..so good.  




This is the Pic I posted on FB the other day, with an update.  In short, the initial IV antibiotics from Tuesday weren’t cutting it, and my face continued to swell….prompting the mask for public outings. And I’ve been switched to another, stronger cocktail of 3 antibiotic/viral drugs to kick this in the be-hind.   (This was Thursday)

Now...I have to be honest, I wasn’t ONLY trying to remain upbeat and positive...I truly didn’t want to share the ‘real’ pic of underneath the mask, because it’s awful, and ugly, and makes me feel self conscious.  Not to mention, I don’t want to be seen as ‘looking for attention’  or creating drama.    

This ain’t drama friends….it’s real.  And it sucks...but I don’t want sympathy...I just want people to understand that Crohn’s isn’t just a ‘icky POOP disease’

In fact, that’s never really been my issue…more a matter of my insides suddenly, and without warning  exploding outwardly in a blaze of glory…and me not knowing what the HELL was going on!    What this meant for me was that I didn’t have a ‘soft introduction’ into the world of IBD...it was hard, fast, and terrifying!  Modifying my diet, or lifestyle was of little consequence at the time I was diagnosed, as I had become septic from an infection, and a surgeon likened  my intestines to  ‘Zombie flesh’ when explaining why he couldn’t just ‘cut out the bad part’.  Zoinks!   

I was faced with a few months of trial and error with a batch of ineffective drugs, various antibiotics, then  Imuran & Methotrexate to name a few…and eventually ended up here, on  Humira.  Ugly stuff in those ‘side effects’ and ‘warnings’ tabs friends.   But hey…under the circumstances, I needed to get things under control FIRST, aka REactively, and then work on being PROactive, now that I knew what the heck was going on.  

As I cycled through the first few drugs,I was treated to a host of UNpleasantries… such as an all over body rash and later, debilitating nausea, and projectile vomiting, and never any real relief. I quickly hit a crossroads…suffer, or try Biologics.  I actually hesitated for more than 6 months before going ON the Biologic drug - as I mentioned, in this case,  Humira solely due to the side effects.  Readers Digest version:   ‘FATAL LYMPHOMA’ jumped out at me, as did  having a suppressed/weakened immune system  - although, I was just thinking this meant having a cold for 2 weeks instead of 1 - WRONG!!

In the interim,  even after the host of drug trialing fails, I was in constant pain, suffering GI distress, and had also become severely anemic  due to the inflammation in my intestines interfering with my ability to absorb Iron.  Cue Iron Infusions!  (oh what fun!)

So I finally decided to bite the bullet and give biologics a chance.  Fast Forward over a year to present day, and THIS fun ride!   And  OH, have I mentioned that I’ve still never achieved 100% remission/healing in this time!??!   UGHHHHH!

See what I did there ??  Distracted you from wondering what is under the mask?  Did it work?  Well, ok kids.  Here you go.  

THIS is what Crohn’s (and Biologic, immune suppressing drugs to treat them) looks for me this week:  




Pretty, right?    This was me waking up Friday morning.  Lying down causes all the fluid (byproduct of the infection and actual swelled/infected areas) to rush to my face...so my eyes swell up, as well as my cheeks and throat.  My nose appears to have grown two sizes as well!      The rash itself had begun to blister, and ITCH like craaaaazy….more than once I woke up scratching, and was bleeding as a result.  I even put a sock on my hand to stop myself!    The swelling is not fun, but this rash is unbearable!   

I finally decided ENOUGH….I am DONE with these drugs.                    

NO amount of gut happiness is worth THIS….AND….let’s also not forget…             THIS. IS. NOT. MY. FIRST. RODEO with #TheSwellLife !!

I had a previous episode back in December that knocked me out for 2 weeks, running right up until Christmas EVE!!!!!!    





← Exhibit A:  

and if you just said “Hey….THAT’S not Festive at ALL” well….then, you win a PRIZE!!!!   (Hint...it’s probably Cheese!)

Not willing to partake in Round 3….I called my GI Specialist and went in - all cloak and dagger like, in my mask.  (which if you are not a people person, I HIGHLY recommend…..everyone steered a good 10 feet around me!)   

Upon removing my mask, the Doc GASPED, and IMMEDIATELY agreed that I am NOT to take another dose!  I can go back to a much lesser category of  anti-inflammatory via a drug called  Pentasa.   Even if it means my guts get a little ugly at times, it’s better than this!!!      It IS noteworthy to state, for the record, that I don’t advocate NEVER trying Biologics…..they, or rather THIS particular drug, just didn’t work out for me…..unfortunately, this is a pretty steep learning curve!!!    



                                                                   SO….WHAT’S NEXT!?!??!     

 

 Moving forward, I get to hang out with my  IV pump for another week, and I’ve even KIND of made friends with the damn fanny pack it goes in.


  I can also tell you that I have had an ‘ah-ha’ moment of self awareness when I have been forced to be stationary to charge the pump for approximately 1 hour if I am not in front of a TV or computer!    Gaaaah….my inner SQUIRREL automatically flips to MAXIMUM Squirreling Setting!  



 Thursday, we reassess, confirm all infection has been sent packing, and #unplug






As if a fanny pack isn’t enough fun….are you ready for …....the BEST news of all??????  

 THIS is my Sunday face!!!   



Yeah, it's still pretty raw and sore in the cheek area...but man!  

WHAT a difference a few days makes!!! 

I credit the trifecta of antibiotics I’m on - PLUS liberal doses of my homemade balm,  applied every 5-10 minutes (seriously…..that often!)   Made from Organic Coconut Oil mixed with  Frankincense & Lavender Essential Oil.   

All of the terrible scabs (I was terrified i would have DEEEP scarring from such terrible inflammation!) have been reduced to what looks a bit like a really, really aggressive case of windburn/chapping. (but does feel a little more like a chemical burn)  

If THIS is not something to be upbeat, and optimistic about, I just don’t know WHAT IS!?!     

So…..this is my update...well, actually  me spilling my (not so healthy/happy) guts.   Mainly as a means to explain thoroughly, and thoughtfully how I got here...AND letting you all know that your support, and willingness to try and understand WHY this was happening, and how the heck to make it STOP  has been immensely helpful in a time when it would have been easy to simply feel helpless.    

So….that’s it for tonight…THANK YOU for caring...loving and sharing.   

And let’s all pray for and END to #TheSwellLife   not just for me, but for everyone!  

J~

xo

#SuckItCrohns

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