The New Guy…

While I applaud my efforts to try and catch up on two and a half years of blog posts, I’ll stop clapping, bring you up to speed and then go forward from there. I’m so ambitious… in my head.

So in November 2013, I had a resection, had a pretty easy time of it, got the morphine pump, left the hospital, ate lots of Vicodin, weaned off of Vicodin, went on Cimzia (which is a whole ‘nother post) and had a blissful two and half years of remission with a few flares sprinkled in there for good measure.

I started eating healthy, I started exercising. I even ran three 5ks and really enjoyed every one. Really, I even ran one on vacation. Then in March 2016, everything went down the crapper. (Pun!) I was inflamed, wiped out, foggy, fevery, and my stomach was KILLING ME  I was moved from my original GI (who I really liked) to a new specialist.   He’s a nice guy and he looks a little like my brother, Paul.  He had me do a few tests, colonoscopy, CT Scan, etc. and put me on 6-MP (which is also called Mercaptopurine for those who speak medical).  I was on that and Cimzia through most of the summer.  I was sort of feeling better and began to eat a few too many salads and ended up in the hospital for three days with a alleged obstruction.  I escaped the hospital without having to have surgery and began a very real fear of raw vegetables. I don’t know if there is a name for fear of vegetables, but there it is.

After the hospital, I lived on a steady diet of mush and garbage….the more highly processed the better, but it didn’t seem to help at all. Still in pain, still foggy, exhausted and afraid of vegetables and did I mention the pain?

So fast forward to two weeks ago. I started a new drug with the 6-MP called Entyvio. It loads just like Remicade, but it takes way less time to infuse it, maybe 30 minutes. I get a loading dose, then two weeks later another dose (that was tonight) and then I get another dose in 4 weeks and then another 8 weeks after that and then every 8 weeks thereafter. So far, I’ve had no major side effects except feeling very strange, like goofy? and I also haven’t had any improvement to write about.

I found an Entyvio support group that has been instrumental in navigating my way through taking Entyvio. It seems that it takes several months for Entyvio to take effect if it even does in the first place. I’m so very grateful for the folks over there. If you are on Entyvio or considering going in on it, I urge you to ask for membership. It’s called Entyvio Warriors and it’s on Facebook.

Until next time!

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