Pilgrim thank you for the kind words.
In 3 years she has had every form of IBD. I think time will tell what she actually has, and I would be shocked if it is not crohns. In November of 2012 her MRE had inflammation in her esophagus & her terminal ilieum. It's great she hasn't had it there since May of 2013, but it was there, and by definition once there it's crohns. Just because the last 2 years has only shown inflammation in her colon doesn't make the past go away. Our 1st GI thought of it as the meds she is/has been on are working strong enough for her small bowel, just not strong enough for her large bowel. I pray after Wednesday & the colon is completely gone the drugs can keep crohns from coming back.
I think her current GI is overzealous & would love to prove the last GI wrong in diagnosis, like she made an error (and this current GI is too / busy to read her 2 years of paperwork in depth). To our face she will never call D's disease UC. The MRE was done by her hospital, her tecnician. She went back to the original slides and looked back and said because of that she can't rule out her last GI made the right diagnosis. But when D responds stronger to drugs known to work best in UC it makes for some confusing results. This GI has also been MIA since our 1st surgical consult. No follow up appt. With her, nothing. She is literally 1 floor below the surgical department. I am glad the surgical team and staff have been so amazing. That department is what makes Sickkids have the reputation it does, and deserves.
Her surgeon believes after a few years D will present clearer with crohns once the colon is gone. That is why he doesn't want to perform a j pouch surgery, which is the next step if she had UC. In 3 years she moves over to the adult hospital. He said we shouldn't even think about it until then, & his recommendation is wait 10 years, or after children.Puberty wrecks havoc on our kids medically and takes a while for the body to regulate. I'd rather play it safe. Once you connect a jpouch and it has issues not solved by antibiotics & they reverse it you don't get another chance.
So my early morning (cause I can't sleep) rant is summed up by it doesn't matter what from of IBD they call it anymore. It doesn't change her direction of care. The docs can guess at whatever. I don't care, we know what her next few years of treatment look like, and that is just fine by us. BTW I'm still calling it Crohn's Colitis to people that ask. I'm guessing in a few years I will just be calling it crohns again.
thinking of you.
