Possible Crohns after ileostomy 😰

Not yet. The problem is, is it a really busy time of year for me and my best hospital is a 1 hour 30 mins. I know something isn't right. I am concerned about this as I can see each day going by all with no appetite and pain after food, especially in the morning and at night. I see my face turn back into that dreadful grey colour it was before the operation. I had an endoscopy done 2 years ago and the doctor said he never seen as many duodenum ulcers and stomach in a child. I never had one done since . The ulcers were dormant.

Post Edited (S) : 8/13/2016 11:44:51 PM (GMT-6)

Wait, what?! Your GI said they only deal with the colon?! That is the MOST ridiculous thing I think I have ever heard a doctor say, and I've heard some stupid things. That is total BS - you need to find a new GI asap.

Sorry you arent feeling well. It is crazy that the doctor won't see you. People are diagnosed with UC and later diagnosed with Crohns a fair amount. Did they do pathology on your colon when it was removed?

They changed my diagnosis a few times but my pathology from surgery was what finally confirmed Crohns. My disease has always been confined to my colon but since it is Crohns my GI has me on 6 month follow ups post surgery. I have an Ileoscopy next week to check my small intestine for inflammation/disease, similar to colonoscopy but no colon so scope just goes into your stoma and small bowel.

I would say you at least need a CT, possibly a ileoscopy depending what the CT shows.

Hmmm that sounds odd to me. Usually patchy versus entire colon is the theory they use when all they can do is a colonoscopy and small biopsy. When they removed your whole colon they should have done more extensive pathology looking at all the layers of the colon, like was it only colitis in the mucosa lining of the colon or did the disease permeate through layers of the colon.

From scopes is why they changed mine to UC but once they had a whole section of my colon and saw the disease went through all layers and actually had tiny perforations all the way through they changed it to Crohns.

I actually don't have any disease on my right side at all, it was always left side and rectum. Even after my last surgery all the pathology on my right side was clean but it is still Crohns.

I agree with labradorite, having your family not believe you is very difficult. How old are you? Are you reliant on your parents for insurance and care?

When I went for my final surgery my GI didn't believe me and didn't think I needed surgery yet and my own mother said I was being hasty opting for more surgery.
I knew how I felt and that this was the sickest i had ever been. I finally made the decision on my own to see the surgeon by myself. Lucky for me he is the persom that listened and after one CT agreed with me. Fortunately I'm older and on my own health insurance so it was easier to do what I thought my body needed.

It isn't easy but if you know something is wrong you will have to keep pushing until someone listens. I know, easier said than done for sure!