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Diagnosed UC 2004 But Flaring With Perianal Fistula: Is It Crohn's?

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Crohn's Disease
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Posted 3/14/2017 11:28 PM (GMT -5)
Hey all,
I've been in the worst flare of my life, starting around Christmas and peaking circa 3 weeks ago. I was on 60mg Prednisone starting mid-January have now tapered to 30mg. Started Humira Feb. 4th and just took my 4th injection this past Saturday--it's finally starting to work.

Now I have a perianal fistula--can't tell you much about it now but I have an MRI on Friday and Cipro/Flagyl appear to have helped both fistula and colon.

GI shocked me when he said he thinks I have Crohn's because I have a fistula. But my disease has never acted like Crohn's. I'd like your opinions on whether you think it's UC or Crohn's and any suggestions on other (less common) criteria to look for to help evaluate my symptoms.

Argument for Ulcerative Colitis:

1. I quit smoking cigarrettes in July 2004 and was hospitalized and diagnosed just 4 months later in November. I smoked off/on for years and during my "quit" times I always found that smoking a cigarrette calmed my symptoms.

2. Have had 4 colonoscopies and all showed Ulcerative Proctitis--no inflammation anywhere else.

3. I have never been malnourished or lost weight without trying. I was actually a fitness/figure competitor from 2005-2010.

4. I can pretty much eat what I want, save for gluten and excess refined sugar.

5. Rowasa enemas put me in remission in 2013 when Remicaid failed to (again, because the only inflammation noted was distal).

Argument for Crohn's:

1. I have a perianal fistula.

2. The past 2 years I have had frequent and very deep and painful mouth ulcers (which GI attributed to UC).

3. I had some pain and a lot of gurgling sounds around my stomach region during the beginning of this flare--totally new symptoms. But maybe just leaky gut?

4. Lialda didn't work for me (years ago) but Asacol, Delzicol and Pentasa did. I switched from Pentasa to Apriso at the onset of the flare. So meds that are geared toward colitis maybe aren't the best for me.

That's all I can think of. Feel free to ask questions.TIA
Posted 3/15/2017 6:52 AM (GMT -5)
I don't think any of your arguments for UC are particularly compelling. Crohn's can present as proctitis, for example. Weight loss isn't inevitable. Some folks can eat whatever they want within reason, including me. And if you have proctitis then it's not surprising that Rowasa enemas worked. Dunno about the smoking - maybe. Perhaps.

As for the arguments for Crohn's, by far and away the strongest one is the perianal fistula. UC doesn't affect the anus, if I remember rightly, but Crohn's does.

One thing to remember about UC and Crohn's is that there is a grey area in the middle where the two diseases can overlap. There is a subtype of Crohn's colitis known as UC-like Crohn's, i.e Crohn's which has some of the features missing of classic Crohn's. That said, UC doesn't "turn into" Crohn's disease, so if you do have Crohn's now then it was Crohn's all along, but misdiagnosed as UC due to it not being clear which was which.
Posted 3/15/2017 7:05 PM (GMT -5)
Yes.
Posted 3/15/2017 8:38 PM (GMT -5)
The exact same thing happened to me. Once you have a fistula, it's Crohn's. UC doesn't go out far enough in the lining of the intestinal wall to make a fistula.
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