I am only 4 months into my renewed wonderful life with a permanent ileostomy due to Crohn's Colitis. I wondered a similar thing a few weeks ago and posted about whether those with Crohn's Colitis in the large intestine only would still need to keep seeing a GI once a permanent ileostomy had been done.
Most said they do have a GI on board with periodic visits and and I think all with Crohn's confined to the large intestine were not on any meds.
So, I did make an appt with a new GI and she pretty much agreed that ''if it ain't broke, don't fix it'' regarding meds. She also confirmed that there was only around an 20% chance that there would be recurrence in my small intestine. Mine was confined only to my colon & rectum...so I said ''bye-bye'' to both and my anus, too. Geesh, where else can one speak so freely about such private areas of the body, exept here :)
At any rate, in about a year from now, she wants me to have an upper scope and will also go 10 feet into my small intestine via my stoma [who knew they can do this?]. She said if all is well at that point we will just take it as it comes.
From all I have read & heard [I researched extensively before surgery] the key seems to be if there is no small bowel involvement.
Get a good GI on board and take it from there :)
57 year old Grandma in the Buckeye State.
DX'd in 2006 with UC and in 2007 DX changed to Crohn's Colitis.
June 2010 had 10 inches of my colon removed due to a stricture.
Refused Remicade and Humira and opted for what I was certain the end result would be.
July 2011 had a proctocolectomy and permanent ileostomy without reservation.
Got my life back and stoma Lillie and I are doing great !!!