So kind of holy shit, still processing for me.
Background:
So I've got Crohn's Disease. Diagnosed in the 2000s, tried every treatment pill available and nothing worked, got really bad and almost died until I have a small bowel resection surgery in 2009 where they cut the section of my small intenstines out where the bulk of the crohn's germs were located. Immediately after I went on remicade infusions every 6-8 weeks which make me pretty immune suppressed, especially to colds/respiratory diseases. In order to try to prevent the Crohn's from coming back and getting bad again. It's also made surgeries risky and I've had to take a lot of antibiotics for lots of things and I don't do great with those.
I've been generally ok with GI for last 10 years other than still haven't issues from the surgery and having to take like imodium and probiotics daily and avoid spicy foods, dairy, gassy foods, really acid foods as much as possible. So like 75% ok GI. But I've been sick every 2-3 months and generally knocked out bad for 2 weeks at a time each time from every cold/flu in the world that comes through my state. I've also been taking too high dosage of the remicade since I've lost like 15 lbs due to food poisoning last November and H1N1 last month and I was already a bit too high dosage.
Current:
I'm 7 weeks in right now and would be doing my next infusion around next week. I wrote a long letter to my GI doctor (whose like the biggest expert in the field at Cedars in LA) explaining how my Crohn's has been in remission for 10 years, my remicade antibodies test have shown I've developed 0 antibodies to remicade medication despite being on it for 10 years (normally people develop those years in and have to go off remicade because it's not effective anymore) which seems that maybe my body doesn't really develop antibodies to the remicade (which is the main concern of going off it and not being able to go back on it).
I said considering the COVID19 situation and it being respitory and my bad history with colds/flus like H1N1 almost killing me last month being pretty bad and that I'm generally doing good now and would rather be in the 38 going on 39 year old with no complications category of survival rates if I do get COVID19 (and I get everything so I'm sure I will get this in the coming months), maybe it makes sense to go off my remicade and see how I do and go from there. I told him I was aware that it might not work when I come back to it but also that there are other newer medications which could work.
Anyhow he got back to me today and said given the fluid and unknown situation of COVID19 and where I am and that I'm aware of the risks of the crohn's coming back and remicade not being able to work, he's ok with temporarily stopping my remicade medication for now and seeing how I do. He says there have been a lot of new medications in the last 10 years if remicade doesn't work again, though they also have a risk of not working.
So that's that. I'm not doing my next infusion next week. And in a few weeks the remicade should be out of my system for the first time in 10 years
...and I will have an normal, not suppressed, immune system of a generally good shape 38 going on 39 year old for the first time in 10 years.
...I also have no idea how my Crohn's will act since I've been on this since it's been gone.
So a bit of an unknown, but I'm pretty excited about not being immune suppressed for the first time since I've really had a social life. It's also made me slightly less anxious about the COVID19 situation because I feel less like "Welp, probably gonna get it and 50/50 on whether I die from pneumonia" to "Welp, probably gonna get it, but hopefully it'll be mild and I'll be ok after a few weeks of feeling shitty"
Gonna hope for the best and that my Crohn's doesn't come back and I can enjoy being a healthy immune system person this year and then next year when COVID19 is under control I can get back on some form of prevention to keep my Crohn's from coming back.
