Those With Crohn's Colitis and Permanent Ileostomies . . . Do You Still See a GI ?

I had my surgery on July 14 and all evidence points to the only involvement was in my Colon.   Upper scope and small bowel follow-through show no signs of involvement there.  And, my GI and surgeon both went about 8 inches into my small intestine during my last and final colonoscopy [Dec 2010] and during my surgery and found no involvment.

My regular doctor thinks I need to see a GI since Crohn's is not curable and it could happen again, even though there is only a small chance, like 20%.

I have seen some comments from those with CC about being drug-free and feeling great. 

So, do any of you still see a GI regularly?

My daughter was first diagnosed two years ago with Inderterminate Colitis favoring Crohns. They said that usually in small children (she was only 3) the disease presents itself as Ulcerative Colitis but then in most cases it can change to Crohns disease after a few years. During her surgery all of the surgeons said that her small intestines were fine, no disease at all.
So she was drug free for two years, but then a few months ago we noticed white spots on her stoma, (first sign of crhons) but they would come and go so we didn't think much of it. Her GI said that as long as she didn't have other symptoms she was fine. Well last month she experienced severe pain, D, and cramping.
Needless to say now she is diagnosed with Crohn's disease and is on a maintenance drug.
Even before this episode though we were told that we should meet with our GI once a year around her birthday. I think in the beginning you should definitely keep in touch with your GI. It's always better to be safe than sorry.

My gi said it would be once a year when I settle down.... next appt was for 6 months.... he is the one of my docs that I trust the most, so I'm not ready to have him all the way out of the loop...

flchurchlady,
My daughter is on Azathioprine and Prednisolone right now, although we are hoping to wean her off of the Pred. in the next month or so. We have to make sure the Aza. is working before cutting the pred.

So far so good though, keeping our fingers crossed and hoping that we finally found something that will work. in the past we've tried everything even Remicade and nothing worked, so we really need a miracle. She's had already two surgeries and she's only 5.

Katiesmommie, my heart goes out to you and Katie. You can count on me to pray for a miracle.
Hugs,
Cece

I had my ileo done 20 years ago and have always seen my GI minimum of once a year. Unfortunately my CD also involved major small bowel problems and so had to go on azathioprine in 1995 to keep it a bay. Mostly it is a quick 10 mins appt to say everything is fine and no problems but if anything starts causing problems then I see him more often.