No response to medications, now having surgery

[Amandakmk]

Hi everyone it’s been a while since I have posted but I have had so many sinus infections and just feeling so lousy . Currently I am on 40mg Humira every week and .5 mexthrotxate each week the dr tested my levels and it was not showing up and I have what seems to be a constant flare , now my gastro has sent me to a surgeon to have that 15cm area removed . I have not responded to any medications and they feel this will be best for me . My blisters on my hands and feet have improved some but when I get stressed it flares up. I am really nervous about this surgery which happens on the 27th. I still have tons of joint pain and fatigue. There is so much that crohns has changed in my life

 

[my little penguin]

What meds have you tried ?
Each med has a different pathway
Some work better than others depending on the person

anti tnf alpha
Remicade
Humira
Cimiza
Simponi-most UC approved

il12/il23
Stelara -small intestine more than large

entyvio-gut specific-large more than small


Ilaris IL-1 in refractory case stud

ivig (immuno goblin ) in refractory case studies

skyrizi IL-23
Phase III trial US


Hopefully the surgery removes the trouble spot and lowers the disease burden
Good luck

 

[SooBee]

Hi everyone it’s been a while since I have posted but I have had so many sinus infections and just feeling so lousy . Currently I am on 40mg Humira every week and .5 mexthrotxate each week the dr tested my levels and it was not showing up and I have what seems to be a constant flare , now my gastro has sent me to a surgeon to have that 15cm area removed . I have not responded to any medications and they feel this will be best for me . My blisters on my hands and feet have improved some but when I get stressed it flares up. I am really nervous about this surgery which happens on the 27th. I still have tons of joint pain and fatigue. There is so much that crohns has changed in my life

I’ve had two bowel resections for obstructions with Crohn’s; the first in 1972, (removing 18”), which was really unpleasant. Took weeks to recover. I then had many pretty good years, although life is never going to be without problems once you have Crohn’s. I had the second resection in 2015, (removing a further 9”), for a further obstruction at the site of the previous resection. I was astonished by the amount the operation had improved from the first op. Probably three really rotten days, then a very fast recovery. I’m on Azathioprine and Salazopyrin, and have been, broadly, pretty well since the last resection.

 

[Guerrero]

Hope you’ll feel better after this surgery. You can fight this and you will.
Let us know how you are soon.

 

[Lady Organic]

How are you?