Game Plan

I saw my doctor again on Sept 20, and it was a really good visit. I explained to his nurse that I was frustrated because I felt that I needed a doctor who sat down and explained things to me - the what, the why, all of it. I needed to understand more about the game plan - both immediate and long-term. I didn’t know if that meant I’d need a new GI doc, or if Habib was capable of giving me this. She said he typically was really good at that sort of thing and is all about the patient and helping them understand. He hadn’t been with me thus far; he’d been pretty brief and to the point and thankyouhaveanicedaybyeee. She said she’d mention to him that I wanted/needed more thorough explanations etc so I felt more informed and less confused and scared. 

When I went back to see him, you could tell he was trying to slow down and be more thorough. I asked him a few questions (What exactly is Ulcerative Colitis? What does this med do vs that med? What happens if this plan fails, what’s the next option?). He launched into a thorough and attentive explanation that helped soothe my worry that I might need a new doc. He did great. He gave me what I needed. I left feeling really optimistic and super relieved.

As for the actual game plan: He started me on another drug called Azathioprine. It’s an immunosuppressant maintenance drug that should keep my inflammation down and let me taper off the Prednisone. The Prednisone calms everything down, and then the Azathioprine keeps it there. If I tolerate the Azathioprine well, I could be on that possibly forever. And I was to taper down off the Prednisone from 30mg (that I’d just gone to) to 20mg in two weeks and then stay on that until we meet again in a month. 

We’ll do blood work before our next meeting to make sure everything is good and have another scope with biopsies later on to see if everything is healing up okay. Oh, and he also had me stop taking Sucralfate, keep taking the Pantoprazole as prescribed,  and start taking two Folic Acid pills a day to combat potential side effects of Azathioprine. If that doesn’t work and things flare up again, we’ll look into stronger drugs like biologics etc. 

The first few days I took the medicine, I was so blasted exhausted. Like I literally could not keep my eyes open one day. It was really concerning. I read online that people tend to take it at night, and I tried that. It helped a lot. 

I’ve also been avoiding dairy, trying to eat more cleanly and plant based, and avoiding gluten or at least too much of it. I still need the THC to combat the tremors and panic/tension, but I’ve figured out a pattern that works for me. Hopefully it’s working on my insides too. I guess we’ll see.