Posted 6/16/2019 7:34 PM (GMT -6)
It has been a busy week last week, but a lot of necessary things happened.
A couple weeks ago, I ended up in the ER again for upper GI bleeding. They figured it was probably Crohn's related, due to the fact that the blood loss stopped after they got me on IV steroids a couple days. The IV stuff usually gets control of things pretty quick.
Anyway, the local GIs pushed hard for me to get into Dr. Rubin in Chicago. Rubin won't see me without going through local GI's, so I am continuing this confusing yet necessary process. The PA who saw me the most actually called them to light a fire under them to get me into the clinic in Chicago quick. It worked, as she got one for me last Wednesday.
Both my local GI and Rubin are on the same page... both agree in trying me back on Remicade again. They said because of my surgery last April, it could have sort of reset things to the point that the Remicade would work again for me. I am skeptical as this would be the fourth time of trying it again (it was the first biologic, first one I was on in 2001, and first one to put me into remission for five years until 2006 or so). The other medicine, the immuno-supressive that usually goes with it, they don't agree on purely because of the possibility of my wife and I having another child. The local GI and I agreed to try Remicade with 100mg of 6MP, instead of going to Methotrexate. They are also going to scope me in Chicago after two infusions (full balloon enteroscopy to see the entire intestinal tract).
I also got another shot in my neck for my migraines, and my PM also gave me a contact for a neurologist who specializes in autonomic neuropathy, which she is fairly positive I have. The signs do point to it, and it could explain the constipation/motility issues. I still occasionally get numb tingling fingers and toes, have a bit of a shakey hand, and some other signs that seem to point to it. SO we are going to try to unravel that, too!
It has been a rough year +, nothing normal... but I feel like we are getting closer. The cancer stuff really created a lot of complication, and even Dr. Rubin said to me a few times that my case is a very tough one. To have one of the best GIs in the country for IBD say that is a bit disheartening, but hopefully something will work!