De Novo Crohn’s: Say What?

I was recently diagnosed with Crohn’s disease. More specifically, my doctor believes I have de novo Crohn’s disease. So what exactly does that mean? I’d never heard of it, and I’ve had IBD for years. It turns out that de novo Crohn’s is Crohn’s disease of your ileal pouch (a j-pouch in my case), that may or may not also involve your small bowel (mine does).

De novo Crohn’s occurs years after anastomosis surgery, and luckily, it’s relatively rare. The main symptoms are virtually the same as any IBD: abdominal pain, diarrhea, and fatigue. For the first few months, I (and my doctor) assumed I simply had a stubborn case of pouchitis, until a scope showed cobblestone ulceration throughout my pouch and proximal small bowel; the hallmark of Crohn’s disease.

There are three sub-types of de novo Crohn’s: inflammatory, perforating (resulting in fistulas), and fibrostenosing (which causes a narrowing of the bowel). Fortunately, I seem to have only the inflammatory type at the moment. It’s the little things, right?

Treatment for de novo Crohn’s is the same as for “regular” Crohn’s: steroids, biologics, methotrexate, and 5-ASAs, although these treatments aren’t always effective (hell, they didn’t work the first time ‘round, or I wouldn’t have had my colon removed). Subsequently, the prognosis for de novo Crohn’s isn’t great, with up to half of the people diagnosed eventually needing either a pouch resection or pouch reversal with a permanent ostomy.

Am I exhausted? Yes. Am I in pain? Yes. Am I worried? Not really. I mean, what would be the point? There is nothing I can do about the disease running its course, except try all the treatment options available to me. Am I afraid of going back to an ostomy, this time for good? Yes and no. I like having an internal pouch. It’s not a perfect solution, but it has worked well for me up to this point. On the other hand, I didn’t hate my ostomy, not even a little. It wouldn’t be the end of the world for me. And because I believe in always moving forward, I’ve started making a list of all the great stuff I can do with an ostomy that I can’t do with my j-pouch, like eating my weight in hot wings. And jalapeno popcorn. And curry, just the way I like it. And … well, you get the point.

So, am I optimistic? You bet I am.


Source: Yamada’s Textbook of Gastroenterology, 2 Volume Set, edited by Daniel K. Podolsky, Michael Camilleri, J. Gregory Fitz, Anthony N. Kalloo, Fergus Shanahan, and Timothy C. Wang.