so i had remicade on thursday and it seemed to do nothing. i'm hiding in my house today after an attack interrupted my script meeting and made it impossible for me to work. i have a flex sig on tuesday to figure out if there's been any improvement. i'm going to ask to try again with an increased dose, hopefully in 4 weeks or sooner instead of waiting 8 weeks. i'd like to be in sorta-remission by september, like how i felt after my first dose. if that means upping remi and adding entocort, let's do it.
a fun activity for me lately has been figuring out what i would define as remission.
1. no gurgling monster sounds and feelings in my guts
2. no rectal meds
3. no accidents while sneezing
4. no urgent running to the bathroom
5. no waking up in the middle of the night to run to the bathroom
6. no anemia, no fatigue, no more zombiedays
7. being able to eat veggies, even if they haven't been cooked to death
8. being able to eat slightly spicy things without praying for death
9. being able to eat seeds, fruit/veg with skins, whole-grain foods
10. being able to not have my life revolve around what goes in and what comes out.
and i want all of this while still having my colon. ostomy is not an option, not yet, please.
Detective stories
5 days ago
1 comment:
Hello. I feel your pain... Just been told that infliximab (i think this is what we call remicade in the UK)is my only real option. They kept threatening me with an ostomy earlier this year. The buggers.
Great blog.
Post a Comment