@Scott F posted:Marc, although Crohn’s does sometimes cause pouch failure many of us do just fine with medication. You might benefit from a more optimistic doctor. That being said, people report much better experiences with permanent end-ileostomies than temporary loop ileostomies.
I would follow Scott’s advice; I’ve read many a post on this forum where members have been diagnosed with Crohn’s after many successful years with a j pouch; although I can’t recall reading post where members have had to live with a permanent ileostomy, having had their J pouch removed as a result of Crohn’s.
Within medical circles; I believe the jury’s out when it comes to a ”Crohn’s of the J pouch diagnosis” once the colon has been removed.
After being treated for UC since 1993; my Surgeon and his Pathologist, were adamant, I had actually been suffering from Crohn’s; and therefore not a candidate for J pouch surgery.
After nearly 10 years with an end ileostomy, no medication to treat or prevent a flare up (other than loperamide) and due to my persistence, I finally got a J pouch; since 2015.
My initial pathology results should have been sent to a specialist of J pouch surgery or at least referred to a Hospital specialising in such a procedure; but as my surgeon was old school and had such a reputation within the Hospital, I was lead to believe his word was final; I wasn’t even aware of St.Marks Hospital then.
My J pouch was created at St.Marks.
Prior to the creation of my ileostomy, I struggled for years, putting off the inevitable and even though I’d recovered from my last flare up, I was never 100% and once I was, another flare up would occur.
I wouldn’t say living with a Ileostomy is a bad thing, it’s just preferable to not wanting the feelings and implications of a colostomy bag and it’s surely the very last and no choice resort; although looking back, I should have accepted the ileostomy when it was offered years earlier
Follow Scott’s advice; find a more optimistic Doctor.