Canada Mark did have a fistula but it didn't bother him. I used oregano oil for a month with this last abscess. Unsure if it did anything but from what I read you can only use it at high doses for 3 weeks at a time. I'm hesitant to start it again given I'm flaring and have significant LQP. Supplements and probiotics really don't seem to help.
I've seen many IBD surgeons and they all dismiss a repair. However, just this morning I had a consult with a new CRS (originally from Europe) who just arrived here. This is the first time in 4 years I've actually had a direct consult for the purposes of a repair. He didn't tell me anything new....that the success rate for repair with CD is low and given I'm flaring now, he wouldn't do it anyway. The success rate for a repair with CD is 30-50%. That's a better success rate than what I've been dealing with. I don't think it's right or in my best interest to continue to have I & D's which is what I said. He's willing to at least do an EUA and give me (I hope) and unbiased opinion once my bowel has settled.
Interestingly, he was involved in the European stem cell studies. The placebo success rate was 37% compared to the stem cells at 52% so it's not the "magic bullet" we were hoping.
His suggestion is the do the stem cell study over any surgical repair if I have that opportunity in Cleveland. He believes Health Canada will continue to postpone the study here for another few years.
I see my GI at the end of August. I'm sure he'll want to do a scope and then we can determine if I should try Restore or filgotinib or even increase the frequency of stelara. This flare isn't bad....I've had much, much worse so I'm sure it's still doing something. My main concern is the LQP.
Thanks for the wishes. Hope you're well.
Post Edited (U B Tough) : 7/29/2019 11:12:47 AM (GMT-6)