Lizzie, are you out there? Finally, a year after my surgery I have the answers I was looking for. I was referred to a specialist today and he explained thing to me better than anyone else have been able to.
Remember I said they thought I had Crohns when I had that mass removed last Summer? And then when I had the colonoscopy last January they said it showed negative for Crohns so they weren't sure if I had it or not? It's been so frustrating because they kept going back and forth on this.
Well, now I have some answers! The specialist today told me that he believed I did have Crohns when they removed that mass because of the granulomas in the mass. He said it would be extremely rare for it to be something else, like maybe 1 in 300. He said that because of where the mass was located (in the small bowel in the terminal ileum) and how it was contained (not spread anywhere else) that them removing the mass means I do not have Crohns right NOW. I am in remission. That's why it showed negative during the colonoscopy because I had no outbreak. The blood test isn't very accurate either, he said. He also said he wouldn't have treated me with the Entecort after my colonoscopy. He would have treated me with something different.
When I described my symptoms to him (nausea in the morning, diarrhea of and on, and belly discomfort), he said it's because of the surgery and the part of the small bowel they cut out. He said I will never go back to the way I was before. What they cut out had a very important job, he said. He said the liver breaks down the bile and then that part of the small bowel, the terminal ileum, helps break it down further and that there's a valve there (this is where the small intestine hooks up to the large intestine) that helps keep bacteria from going in to the large intestine. Well, they cut all that out. So I have more of a chance of bacteria getting in to my colon and now the bile isn't being processed as well so that's why I have the diarrhea, etc. He even drew me a picture and everything.
Finally, I understand! Finally, someone has been able to answer my questions!
He gave me a powder to take in the mornings that he said should help with the diarrhea because it helps break down the bile or something, I guess. If that doesn't work, he said we'll try antibiotics because it could be that there's bacteria in my colon.
So, in conclusion, he said that because of where the Crohns was located I have probably a 30% chance of it not coming back. When I said that didn't sound to good, he said it's actually better than if I had the Crohns in the large intestine, the colon, because then I would have about a 100% chance of it returning.
He said it may never come back! It might have just been that one time and it might not ever come back! I think that's good news! :) That's what I'm going to hope for and pray for.
I just wanted to share this with you and maybe others on here who have Crohns in the small intestine like I did.
Take care & God bless! :)
April