Usually in the crohns forum now I'm confused

toomuchpoopin said...
You said your first scope showed TI involvement, that's pretty positive of Crohn's.

My GE once told me that once a doctor diagnosed a patient as Crohns you're pretty much NEVER going to shake that label. Future doctors or even exams will just say oh, crohns is in active, or your crohns is only active in the rectum right now. Not sure you will find this helpful, but might prepare you for the battle ahead if you're trying to fight your diagnosis.

Firstly, and somewhat pedantically, I just want to say that TI involvement in UC is possible. It's called backwash ileitis.

But I'm more interested in your second point. From my experience at least that is absolutely true. My surgeon last year briefly tried to revoke my Crohn's diagnosis. When I asked what she thought it was instead, she just said colitis - she denied it was UC. Anyway, I heatedly argued with her; after a few minutes of that she checked her notes. Her notes informed her that three years ago (when I'd had my first surgery) I had 'classic' Crohn's of the terminal ileum.

She then completely changed her mind. Said it was Crohn's. I argued over that! But she denied it could be indeterminate colitis, just said she had got it wrong and that it was absolutely, definitely Crohn's.

Proper strange appointment, that one. (Although don't get me wrong, my surgeon has been very good. Just obviously doesn't have a great memory.)

Anyway, so yeah, from my experience it's impossible to revoke a Crohn's diagnosis once made. Incidentally in 16 years of having the disease I'd only ever had one other inkling from a doc that it may not have been Crohn's and that was fairly early on in my disease. And he was muttering to himself in puzzlement, rather than to me.

Just one more point (sorry, this post is turning out to be longer than I expected). I didn't take mesalazine in the early years, because I couldn't tolerate the stuff. I was on nothing for the first five years of my disease. Anyway things went massively down the pan; after a few years of rowing steadily ever further up sh!t creek I finally confessed my feelings of guilt to a doc to never having taking mesalazine and possibly stopping things from getting so bad. She said that she didn't think it would have made any difference if I had been on mesalazine.

So yeah, I'm with beave in that mesalazine is largely useless for Crohn's disease.

Agreed >_>.

It does get very confusing at times. There's a significant minority of people with IBD that could be Crohn's or UC. And the theories on whether UC and Crohn's are two completely distinct diseases with distinct causes or whether they are at opposite ends of a spectrum (with Crohn's colitis being in the middle) seem to change every few years as well.

In a rush now, as I've got to leave for my vedolizumab infusion. But yeah, I don't blame you for feeling frustrated and confused.

Also about mesalamine- They release at different part in digestive track. Normally Pentasa works for crohns patients with TI involvement. For distal inflammation, you should look for Delzicole, Lialda etc..

http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/small_large_intestine/crohns_disease.pdf

If you go to page 11, it has diagram which medication(5ASA) and prednisone will work best based on where you have inflammation. Hope this information helps clear some of the confusion.