Weird Biopsy Pathology--anyone experience this??

[Lizzy613]

Hello! My ongoing saga to getting a diagnosis continues with today's colonoscopy follow-up. Basically, although at the colonoscopy the Dr said it really looked like I had Crohn's, the pathology has come back saying i have Focal Active Ileitis. Apparently, this is not the usual pathology for Crohn's and as such my Dr is now uncertain as to what is going on with my bowel.

Anyway, i have to take Entocort for 2 months, and then go back for another scope. But has anyone had experience with having this same pathology? What happened/what did it mean for you?

 

[DustyKat]

Hi Lizzy,

Unfortunately the path to a diagnosis for many, if not most, is a process of elimination. In other words what isn’t it before the right diagnosis is hit upon.

I don’t have Crohn’s, my children do, and they did not return the results you have. That said there are are number of causes for ileitis aside from Crohn’s but for a small number of those cases, perhaps 10 or so percent a result such as yours does lead on to a diagnosis of Crohn’s. I have picked up that number from studies I have read in the past.

Do you have symptoms outside of the bowel? Things like rashes, joint pain, eye issues, anything else?
Perhaps keep a daily diary that covers symptoms like:
Pain - where is it located, what is it like, how long does it last, does anything you do for it help.
Bowels - how many times a day you go, what does it look like, is there any visible blood.
Appetite - normal, greater, less
Food - any allergies, any foods that make your symptoms worse.
Weight - gaining, losing, stable
Other symptoms - like those I mentioned above.

Keeping a diary helps you to remember things and can also be a good way of tracking trends. There are apps too for this kind of thing.

And one last thing, have you had an ASCA blood test done? It helps differentiate between Crohn’s and UC but also if undetected for both is likely you have neither. It’s not a perfect test in that it’s reliability is about 70% but again it’s just another piece for the puzzle.

 

[my little penguin]

Depending on where you getting a SEcond pathology read at another hospital is also an option.
We have done this more than once for ds
Not all pathologist are the same
Fresh eyes sometimes see things others may have inadvertently missed

good luck