Thank you all for your responses. We had my son transferred to another hospital where my daughter's surgeon in (he is head of colorectal surgery there). He scoped my son to see if there was anything less drastic that could be done (setons to allow the fistula to drain, etc.). Unfortunately, he also feels that the rectum and anus, even if they can heal from the fistulas, are too compromised from years of Crohn's issues down there. Plus the colon down there is very narrowed. He tried to dilate it but it didn't do much good.
He suggested a temporary loop ileostomy first to allow the rectum/anus to heal. Then after 10-12 weeks (or later), he suggests making that a permanent end ileostomy, and to remove the anus, rectum, and colon. The end of the sigmoid colon is also inflamed from Crohn's. He said if the colon was left (and the anus/rectum removed), the Crohn's would absolutely work its way up farther in the sigmoid colon.
My son is having the temporary loop ileostomy surgery this Tuesday (10/31). Although it's still hard to wrap our heads around how drastic this all is, he is so tired of being sick and wants to start to feel better and get on with life. I figure we can make decisions about the next step in the next few months.
The surgeon did talk more about the differences between a loop and end ileostomy. We know from my daughter's loop ileostomy how much of a pain they are. He (and the ostomy nurses) said the end ostomy will be easier with less chances of skin irritation because it sticks straight out (instead of tilting up or down) so there will be less leaking. We know it won't be perfect. If my son can get through the first ileostomy mentally, physically, and emotionally, I think it's going to be ok.
notsosicklygirl, because the fistulas are still very active, the doctors don't want to start a biologic at this time. Like you said, they also take time to start working and time isn't on his side now.
clo2014, thank you for your openness about your issues. I think my son's surgeon would prefer an ileostomy because of future issues that can come from the sigmoid colon showing Crohn's.
Cupcakespinkgal, my son's Crohn's has always been in the perianal/perirectum area with a small amount in the lower sigmoid colon. No other place in the digestive track.
Tom1, thank you for the kind words. I can only imagine what my kids (and all of you) go through. You are the real heroes. I'm the support system. A mom is only as happy as her unhappiest child.
blksteeda, from what I understand, loop ileostomies are much tougher to deal with. My daughter hated hers before her takedown.
Mom to bratcat (21 years old) and nonamejames (24 years old)bratcat diagnosed with pancolitis 10/06. Flared Fall 2006, Fall 2007, Spring 2008. Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade. 7/3/08-Step 1 j-pouch surgery, 11/08-Step 2 reconnection, no meds
nonamejames diagnosed with Crohn's in 2007. Pentasa, 6mp.