Posted 5/29/2019 12:58 AM (GMT 0)
Welcome Gachi! I have historically had my Crohn's in my ileum (3 surgeries in that area), as well as other areas in my small intestine.
I unfortunately have been a person on all the available biologics, including the latest... Stelara. Right now, I am on Entyvio which is hard to tell if it is working or not. I had a complicated situation in that they thought I had a bad Crohn's flare and I wasn't responding to biologics, but had a tumor growing in there from 2016 until 2018, so any meds (including Stelara) that I was on in that period didn't do anything... obviously... because it was cancer and not Crohn's.
We are trying Entyvio again, as I did well when I was on Tysabri, it's scarier and less specific sister medicine. Entyvio is what they consider the "gut only" version of Tysabri. Unfortunately, I became JC Virus positive after two years on Tysabri with great success, and had to move away from it. I am taking Entyvio in conjunction with Mercaptopurine, an immuno-suppressive and chemo drug. I have always historically done better with duo-therapy than just on a biologic.
I am still having issues since my last surgery, but my pain doc things some of my motility issues may be due to autonomic neuropathy, from the three surgeries I have had and the chemo I was on for 3 months. I am going to be getting a referral for a neurologist shortly who specializes in that.