Posted 8/26/2018 9:50 PM (GMT 0)
As most of you know from my tale of horror, fistula repairs are not even attempted here in Canada, unless a remission is firmly established and clinically proven.
I've been doing incredibly well since I started Stelara, however over this last month (as the scope date approaches) my stools are looser and a bit more urgent. I also had an abscess scare with awful burning in rectum and anus. Don't know if it's a coincidence but the burning rectified itself immediately following my last injection. However, I'm going 3 times a day and today was all mush. (It was 1-2 x day, all normal).
Colonoscopy is Thursday.
I'm seeing a GI in Sept regarding the stem cell transplant for fistulas and he said if I'm in clinical remission he'll try and find someone to repair the fistula.
I'm incredibly nervous that I'm going to be turned down...yet again for some help regarding these blasted fistulas. I think 2 years is long enough....
I'm also experiencing far more stress in my personal life, experimenting with different foods, and haven't had IVIG in 5 weeks. These things could be contributing to my bowel issues. It could be that Stelara may be needed to be increased.
I've loved remission. LOVED IT. But the fear of course of still having visible evidence of this disease is really difficult. I'm going to start enemas tonight.
There's never been so much riding on a scope than there is now.
Just venting...as I know there's not much advice to be had. Thanks for listening.