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Diagnosed with Complex Fistula

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Crohn's Disease
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Posted 7/4/2012 12:42 PM (GMT 0)
I went in for fistulotomy. After my "operation" when I woke up my doctor said that he found it to be a pretty complex fistula with two openings on outside and two (or more) inside and branched out internally etc. So he did not cut any muscle for the fear of me developing incontinence. He just put a drainage seton in it to reduce the chance of infection. I now see two threads coming out of both of the holes of the fistula opening. In addition he referred me to a specialist colo rectal surgeon in stanford, who he thinks can do the surgery to handle such a complex fistula.
He also said that I should not let it stay untreated because considering how complex it is, it can cause systemic infection going forward if left untreated.

I appreciate my "less specialist" surgeon thoughtfulness and humility to let me go to a more specialist surgeon and not giving it a try himself!
But I am wondering what kind of chance of success I have with such kind of complex fistuala even with an expert surgeon. Besides developing incontinence are there other risks associated with getting such a fistula treated by surgery.
Any thoughts would be appreciated.
Posted 7/4/2012 5:33 PM (GMT 0)
SanJoseGuy - I noticed nobody had responded yet and just wanted to say hello and send my support. I'm sorry you are having such trouble with your complex cyst. I hope someone will post soon who has some experience.
I like the fact that your doctor was forthcoming and is sending you to Stanford.

(You live in a beautiful part of the world! I lived in Palo Alto for 6 years... now on east coast.)

Be well.
Posted 7/5/2012 5:07 PM (GMT 0)
While I can't address a complicated fistula as mine was rather mundane, I do know that muscle involvement comes into play even with a seton.  I was told my seton was in a non-muscular area so I would have less risk of incontinence and I was not having surgery beyond that.  I think it is great you are going to see a well versed specialist.  Make sure you address this concern with them.  I only hope for you that the seton can fix your problem without surgery so you are as lucky as I was!

Posted 7/7/2012 4:15 AM (GMT 0)
Hey There,

I'm 28 years old and I was diagnosed with Crohn's when I was 18. Its been an interesting 10 years to say the least. It all came to a head last year when my lower intestine collapsed because of a fistula I had for so long that it had become infected. I had been admitted to the hospital in February 2011 because I had a temperature of 105. The doctors thought I had a severe case of the flu and as a precaution since I was already admitted into the hospital, decided to do a colonoscopy since I had the history of Crohn's. When it was over they had told me that a storm was brewing but everything was so inflamed they couldn't get a scope in to see. They discharged me and told me they would see me soon.

about a month later I wasn't able to keep down food or water. I went to a Crohn's specialist at Cedars in LA and he immediately admitted me to the hospital and told me i most likely had a blockage and would most likely have surgery. about a week and what felt like a million tests later, I had a partial illiotic resection because I had a fistula that had collapsed my lower intestine. Only when they operated did they find that it had been there so long that it became infected.

These few months were probably the worst of my life.

One thing that did help though, was the surgery. The recovery has been a nightmare (everyone is different obviously) but in the end, I'm living way more of a normal life than I was before. I had about 5 doctors that were checking in with me but the one who did my surgery was a colon rectal surgeon. (Super fun when you have to walk into their offices with the big RECTAL SURGERY sign on the door for post opp appointments!)

Either way, listen to your doctor. You are going to feel like you want to die for the first day or so after the surgery (at least I did) but they give you so much medicine you can literally control the morphine button that goes right into your IV.

One thing to be super aware of - for MONTHS after my surgery, I thought I had not gotten better when in reality I had contracted a C Diff infection from being on so many powerful antibiotics while I was in the hospital. Why it took an entire team of doctors almost 6 months after my surgery to think to test me for it is beyond me, but i'm glad they finally did. It still randomly comes back too which is just really great.

To be quite blunt, the next few months are going to be a struggle, but honestly, when we are dealt this crapty (literally) hand of cards, there really aren't any other options. If you don't get it fixed, there will only be more pain and complications down the road. You learn to rely on friends and family in a completely different way, not just for day to day stuff when you are in recovery but emotionally as well. You appreciate things more because you know how bad things can get. That's at least how it has been for me, I obviously can't speak for everyone as each person's story is unique to them.

I hope this helps with your decision making process, I wish I had someone (even if it was on a computer) who really knew what I was going through last year when this all happened. Just know you are not alone, and that there is a light at the end of the tunnel :)

"I'm Veronica Corningstone, thanks for stopping by"
Posted 7/9/2012 6:50 PM (GMT 0)
SanJoseGuy - so sorry to hear you're going through this. I know how confusing and frightening it can all be. My fistula was originally called complex - it appeared on the MRI to have 3 holes inside my pouch: one with an external opening, and 2 sinus tracts. I had an EUA done aboaut 5 weeks ago, during which a seton was placed, and next week I'll go back to have the surgeon check it out and decide on next step (I'm actually hoping some type of surgery to get this taken care of).

I've tried to research all the surgeries that are out there (and there are getting to be more and more methods of dealing with fistulas - unfortunately, the newer, more promising surgeries appear not to be available in the U.S. yet). But after hours and hours of research, I finally got it through my thick skull that there's simply no way I could understand all the pros and cons to each surgery when it comes to my unique fistula to the point where I could make a decision as to what to do. However, all that research led me to put together an impressive list of questions for the surgeon.

Like you, I now have a surgeon who is an expert in her field, and I have made the decision to leave the decision to her. Of course, after our discussion next week, I will take her information and advice on the surgeries and do more research, because that's what I do, but she's the expert, that's what she gets paid for, I feel like I have to trust her judgment.

I hope you and your surgeon find an effective way to deal with your fistula. My best advice is to try to get as educated as you can in order to put together a list of questions for your surgeon.

Please keep us posted on all your future developments - I'm very interested in hearing how this all plays out for you!
Posted 7/11/2012 8:14 PM (GMT 0)
Hi sanjose guy,

My name is alex and i'm also from san jose california. I had my fistulotomy surgery in Fec 2012. Fortunately, mine was not complex. I had two fistulas but they were both low enough to be lay-open without setons. I've been abscess and fistula free for five months now. Just hang in there. I know it's hard and you sometimes feel hopeless but things will get better. I'm so glad i did the surgery. I suffered for 5months before i decided on surgery.

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