Crohns and Colitis Awareness Week 2018

This week, December 1-7, 2018, is Crohns and Colitis Awareness Week.

Crohns and Ulcerative Colitis are both Inflammatory Bowel Diseases (IBD).  They are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever and fatigue.  IBD can be debilitating and sometimes leads to life-threatening complications.  In addition to the impact on the GI tract, IBD may also affect the joints, skin, bones, kidneys, liver and eyes.

As you probably know if you're reading this blog, I have Ulcerative Colitis. My colon hates itself, and also causes pretty severe extra-intestinal problems too - like my uveitis, which is the leading cause of blindness in the United States among the working age population.   I spent a good chunk of 2017 and 2018 legally blind.  And it is because of my colon!

These do not go away.  There is no cure.  There's treatment and there's dealing with symptoms, but for the rest of my life, I will have ulcerative colitis.  I do not get better, it will not go away.

This year for awareness week, I want to talk about some numbers.

For this year:

• 31 doctors appointments.
• 12 blood draws at Quest Diagnostics
• 3 infusions at Dent Infusion Center
• 58 self given injections
• 1 procedure (colonoscopy)
• 2 eye surgeries
• 60 prescriptions pick ups at CVS
• 6 prescriptions delivered by UPS to my office b/c they need refrigeration
• 1 new pair of glasses
• 2 new glasses prescriptions

Want to know what that cost?  $79,445.62.

I'm lucky to have health insurance.  But this year has cost me $6,724 out of pocket.
$560 a month.

$140 a week.

$20 a day just on my health.

This does not include the money taken out of my paycheck for my premiums.  It does not include things not covered under insurance like supplies, guaze, baby wipes, desitin ointment, etc.  Oh and syringes aren't included either.  Because I have medicine that I need to inject, but they don't cover the syringes so I pay for those over the counter.    I also don't know final costs, because I still have doctors appointments and prescriptions in December...my insurance renewed Dec 1st, so it's always a little scary to find out how much things will be on the new plan!

And it doesn't go away.  It's a chronic illness.  My colorectal surgery last year did not cure my colitis. We still don't have a medicine that works to treat my colon.  The medicine we have tried are not helping entirely.  They're reducing symptoms but not the actual inflammation.  Until we find a medicine that works, I'll still be in a flare.  It's a chronic problem.

I had major eye surgery in each eye.  It does not cure the uveitis.  My eyes are not "better" because of the surgery.  They removed my cloudy lens, pulled apart my stuck pupils and implanted a new lens.  The surgery was necessary because of the prednisone drops I have to use to save my eyeballs from the uveitis flares.  It was 100% a side effect of the medicine.  I have been in a uveitis flare since the surgery...there is still inflammation happening in my eyes, because of the inflammation in my colon.  It's a chronic problem.

I don't talk about a lot of the ins and outs of my disease...other than with a few people that I trust enough to tell them the nitty gritty gross details.  It's not pretty and it's not fun.  It's embarrassing in professional situations when your stomach doesn't cooperate.  It's embarrassing in intimate situations when your stomach doesn't cooperate.  It's embarrassing.

But through all of this, it's fine.  I don't share this to make people feel bad for me or sad for me.  I don't need your pity.  My life is not sad.  It can be hard and frustrating, but it's never sad.  I am not sad that I am sick.  I am sick and it will never go away.  I know people mean well, but I can tell when they cock their heads and ask how I'm feeling that they're pitying me.  My life is happy and full.  There's times that I spend the whole day in bed to recover from a busy week, but I've never felt my disease limits me.  I work my ass off to ensure that my problems with my ass don't actually affect my life all that much.  But it is my life every single day, just as it has been for the past 16 years. 5,840 days.   And I'll wake up tomorrow and do it all again on day 5,841.  How do I do it?  I'm not sure but I'm sure not gonna give up.