On to the Next One...

I had a colonoscopy on June 19th.  They put me through the ringer to get it scheduled - it took more than two months and a LOT of fighting with doctors, hospitals and insurance.   I'm literally exhausted over the way medical treatments are handled for sick patients in America.  It breaks my heart.  I'm so thankful that at least I'm well enough to work.  Sure, some days I really have to grin and bear it, and my job allows me to take all the bathroom breaks I need because I'm not tied to a sales floor or something.  I know that I'm a lucky one.  But it stinks.  I literally had a nightmare the other day that I was supposed to have an appointment with my old GI.  I had to go to the bathroom so I "missed my appointment" because I was down the hall and wasn't in the waiting room when they called me and the next available appointment wasn't until January.  I know that's a nightmare, but it's honestly not that far from the truth. My appointment to go over my results with my GI isn't until August 14th, two months after my colonoscopy.  Because our medical system is so broken.  As an existing, sick patient, I can't get in to see my doctor to get my results for two months after a procedure!  It's ridiculous.  It makes me very angry.

My primary care doctor was able to get me my colonoscopy results.  That's right....I can't get the results from the doctor who ordered the colonoscopy (and I've called her three times and emailed three times asking for them).  Obviously, my primary care doctor and her office can't give me specifics on the results, but I've had this rotten disease long enough to know what it means.  The gist is that my disease is still active throughout my entire colon.  Not a big surprise.  There is some pretty significant scar tissue in my colon too, from the constant inflammation for over a year.  I stopped the Humira in March of 2017, so I'm pretty much thinking the inflammation stems back from around then.

In the meantime, I also had to fight with my doctor's office to get on a new medicine.  The Entyvio clearly doesn't seem to be working after a year.  My next step is Simponi.  It's not as commonly used for bowel disease, but I'm at the point where I'm willing to try anything.  So it was another round of phone calls with doctors, insurance and specialty pharmacies to get it delivered.  She prescribed it on June 11th.  I finally got the medicine today.

Simponi costs $3,900 for the first month (three shots).  After the first month, you only take one shot, so it's 1/3 the cost.  That's after it's been run through insurance and all that jazz.  Our health care system is so broken.  Thank god for drug company assistance programs.  But they don't make sense to me, why doesn't the company just make the drug cost less?

I just really hope that this is the answer to get me out of this ulcerative colitis and uveitis hell I've been living in for the past year.  This is another Anti-TNF medicine, so there is still the possibility of lupus again.  I'm honestly terrified.  But I'm willing to treat the lupus if it means I won't go blind.  Living with a chronic illness is sometimes choosing the lesser of two evils.  Given my eyes or my colon, I'd get rid of my colon.  Given drug induced lupus or my eyes, I'd take lupus.

Wish me luck.