04-11-2013, 11:09 PM   #1
Join Date: Apr 2013
Location: Chicago, Illinois
Fistula and tissue damage

Hi everyone,

Is having a fistula damaging to the body, speaking long-term? (years?) I've had a fistula for over four years now and was diagnosed with Crohn's back then. I haven't done much about it. I am only on Pentasa and never took Humira or Remicade (sorry, don't know the generic names). I don't want to take either one as it seems like a huge leap.

The fistula is definitely annoying but I have learned to live with it. I have no other health problems, no stomach pain or anything.

So, the question is, should I seek help with? In, say, 20 years, is my intestine going to be in a-okay condition, strictly speaking on fistula presence and damage that it does? I can't say that my fistula has gotten worse over these four years or that my intestines have gotten worse. My situation has been very stable, I would say.

What to do? Seek help or ignore the disease for the next couple years?
04-12-2013, 01:44 AM   #2
Senior Member
guitarjamie03's Avatar
Join Date: Aug 2012
Location: Texas

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Hi Krogen!

I think it depends on where it is. I had two. One, going from my colon to my bladder and another one going from my colon to my small intestine. The one in my bladder was causing me pain and a lot of UTIs so they had to remove it. They did try treating it with antibiotics first, but it did not work, so they had to do the surgery, and I am so glad they did!

I also take Humira and I have been told that Humira (and Remicade) can close fistulas, but in my case it did not work. I don't think it would hurt to talk to your doc about it, because it could cause a problem later down the road and they can treat them with antibiotics. In my case they wanted to get the fistula out of my bladder because it could have caused a lot more damage if they did not get it out. Thankfully, they caught mine early and it was small because they only had to do a few stitches.

Hope that helps a little!

GJ <><
04-13-2013, 03:59 AM   #3
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Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

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Hi Krogen
And a big warm welcome to the forum. I agree with guitarjamie, I think it depends where the fistula is and what symptoms it's causing. Mine was to the bladder too and the surgeon was worried about kidney damage caused by repeat UTIs caused by the fistula. I have to say, I feel a helluva lot better without it.
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
04-13-2013, 09:09 AM   #4
Senior Member
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
I have read hat a chronic fistula can increase your long term risk for cancer in that area so you may want to ask your doctor about this. I do know that they are often left alone if they don't cause pain and are not interfering with other organs. I also know when they are surgically repaired in people with Crohns, the recovery can be very long and may not heal properly.

You never know if what you read on the internet is accurate at times so ask your doctor about the risks and benefits of 1. Taking biologics for closure, 2. Surgical intervention and 3. Leaving it alone.

I would be very hesitant to go on biologics given your set of symptoms as well. If you have a simple and superficial fistula and have good control of your Crohns, surgery may be an option for you. I know others on this site have had this done. If there is no real increase risk of cancer, leaving it alone may be a good option too.

Best of luck to you.

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