Did anyone mention j-pouches to you? Do you have any intention of getting one or will you be sticking with your stoma?
You are right to be concerned. If your stoma is going to be permanent, you really should have your rectum and anus removed and your butt sewn up. If this is the first step of j-pouch surgery, then the second step will remove the rectum.
In my case, I had a subtotal colectomy and about
a foot of my rectum/sigmoid left in. I wasn't eligible for a j-pouch because I had Crohn's disease. But two years after the first operation, my surgeon reconnected my small bowel to whatever was left of my colon (not a lot). The tediously predictable happened, and the Crohn's came back in the rectum. There was always a chance of that happening of course, but I was hoping to get a few years of Crohn's-free life first.
Anyway, I can tell your surgeon that only a "little" bit of IBD can do that much damage.
Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)