Fistula & Crohns

Sorry to hear about the seton; if you're having some pain with it, sitz baths were a great help to me in the first couple of weeks after mine was placed. I developed two fistulas after my first takedown and while the docs had suspected Crohn's for a while, that pretty much made it official. At that point, due to the fact that Crohn's patients tend to have more complications over time with their pouches than UC patients, my doctor elected to re-divert me back to a loop ileo and I began Remicade infusions for 8 months. After that, most of the fisulas had healed up, but a small surgical repair was needed using a piece of my gracilis muscle. After I recovered from the surgery, they told me I would need life-long treatment for the Crohn's, and I chose to switch to Humira since I could give that to myself at home instead of having to visit the infusion center every few weeks. I'm now on 6MP as well as the Humira, and have had no fistula recurrence since 2007 (knock on wood). Hope this helps!

Thanks Michelle! It's nice to hear other stories. I'm suit used though that they have you a temporary loop ileostomy, doesn't crohns tend to attack at surgical sights and wouldn't more surgeries mean more potential problems? I guess not in your case! I'm glad your doing well!!

Not all fistulas = an immediate Crohn's dx. I'm in a gray area with mine, though my doc still has Humira on the back burner for me. I just don't look "bad" enough all around to grab that Crohn's dx yet.

I too have an RV fistula and no solid Crohn's dx. My original surgeon wanted to label me with Crohn's of the pouch, but really only because he could think of no other reason why I was having so many pouch problems (pre-fistula).

The current docs at Cleveland tell me it's possible I have Crohn's, but there's no real evidence - gross or microscopic - outside of the fistula. I have no other Crohn's symptoms that I'm aware of. They seem to have little concern re. labeling my situation as due to Crohn's or anything else. The concern is making sure the fistula does not abscess or create additional tracts (thus the seton), and that any cuffitis/pouchitis is treated.

I will add that the Cleveland Clinic surgeon did offer up the suggestion to have my pouch redone. Apparently, she did not believe the possibility of Crohn's would impact such a surgery...

I wish for a world without fistulas! My RV fistulas were pretty bad and I've had multiple setons, multiple times. I was switched from a uc diagnosis to Crohn's about 10 years after having my pouch and fistulas (they showed up a year after my jpouch). I was started on Remicade then because it was proven to close fistulas holes and that was my issue (setons still in at that point).

In the end, I had to have my jpouch removed because I had to stop the Remicade due to complication. I was out of drug options and my cuff was such a mess that saving the pouch wasn't an option in my case. But I'm doing very well with my ileostomy.

With the fistulas, I thought the sitz baths helped, acupuncture helped and anything to bulk up the output and keep it from draining through the fistula. I lived with the setons for years. Wish the Remicade could have continued to work!
Laura

Hello! I posted a question in the women's health section, but no one is biting, so here I am! I am pretty sure I have a fistula, my surgeon is going to examine me on sept 8th. He said it could point to Crohns and that it shouldn't be a result of the surgery because it 'went perfectly'. So I think all of you developed your fistulas after surgery too, so why would the doctors say it's from Crohns? How do they know? I read that 3-12% of jpouch patients develop fistulas as a complication from the surgery.
I am afraid I'll need another operation. Why would they do a pouch redo?
I really don't believe I have Crohns....
Thanks,
Katie

Surgeons are a confident lot, so it's hard to know how to interpret his confidence. In any case, fistulae can result from the surgery or from Crohn's, and they often can't tell for sure which it is. If it's a fistula it may turn out to be manageable without surgery, hopefully becoming no worse than a nuisance. Good luck!

Even perfect surgeries can result with a fistula, particularly if there was something unique to you that prevented complete early healing. UC could be a contributing factor.

It is way too early to be thinking about pouch redo, which is more of a last resort thing. But, once established, they are not easy to get rid of.

Sorry.

Jan

I had a fistula, and much is always asked about "maybe it is crohns" but no other evidence, ever suggests that it is. That said, I have now developed chronic pouchitis that does not respond to rotating antibiotics, but is responding great to IBD meds. In the end, the diagnosis is a little fuzzy in many cases, and finding a treatment that works is the goal, whatever the diagnosis. My personal opinion is that UC & Crohn's are not really 2 separate diagnoses, but rather that IBD is probably more of a "spectrum" type disorder. My doc say I don't have Crohns, but we kind of need to treat me as if I have "Crohns of the Pouch" since the other lines of treatment of pouchitis have failed.

I agree, Fistula does not necessarily equal Crohns.