You aren't on rectal meds are you? Odd that you didn't have rectal inflammation, but the rest of the colon did. UC starts in the rectum and works up through the rest of the colon. Did he take biopsies? It's possible that you could have Crohn's colitis instead of UC.
Get copies of your reports and let us know what they say. There are several people here who are good at interpreting results. (I'm not one of them lol)
Good that you will be seeing an IBD specialist. You have lots of time to compile a list of questions for him ... don't be afraid to ask lots of them about diagnosis, treatments, alternatives, etc ... really ask him everything
Interesting that you say I might have Crohns and not UC. When I had my fistula issue (October 2021) the surgeon told me after the surgery that what he saw tells him that I have Crohns and not UC. Now I don’t know the details of that statement because when I pressed him about
that statement at a follow up visit he said it’s really nothing to be concerned about
because “they are treated the same”.
As I mentioned I’m going to ask to switch from Inflectra to Stelara Monday. I already mentioned this to my GI in the after colonoscopy talk. And it sounded like he was good with that, but he added, let’s talk about
it Monday when you come in. Hmmm. I think I remember reading Stelara is really a Crohns drug that has been approved for UC. So, maybe Stelara would work great for me?
In 2016 I started Humira and that worked great for me for 4 years, until I built up antibodies blocking it by taking an I’ll advised “vacation” from all drugs for about
8 months. Which I blame on my old GI. I was in total remission during that time, but he should have warned me about
the possibility of antibodies if I stayed off Humira that long and he didn’t say a peep about
that. When I started to flare after the vacation and then the blood work showed the high antibodies he said “oh yeah, that’s a sure risk when you stay off Humira for a long period”. I really liked that old GI but I wanted to lash out at him when he said that. Anyway, I wound up switching GIs so it’s old news.
Anyway, There’s a guy at my Church that uses Humira and he says it works great for his Crohns. Now I’m thinking maybe that is why Humira worked so great for me all those years???
So…my question…is there really something important about
knowing which I have…Crohns or UC?? Or is that surgeon right?
He did take biopsies yesterday. Does that tell if you have one or the other when he gets those results?
Post Edited (Rusty Barr) : 1/7/2023 7:48:23 AM (GMT-8)