UC Fistula

I have a perirectal fistula which is common with CD but not UC. Has anyone had this? Did you have seton stitch, plug or resection as well as antibiotics or Remicaide?

yeah, sorry to say I'm familiar with fistulas too! I have had a rectovaginal fistula for about 2 years now. I ignored it for quite some time, then finally met with a colorectal surgeon about 2 months ago to discuss surgical repair. It started as an abscess, which burst. At the time, my GI put me on Cipro & Flagyl, just to prevent infection. I had been on Remicade for a while previously to the abscess, & am still on it currently. The surgeon I met with is the head of the Colorectal surgery dept. at Beth Israel Hospital in Boston. Anyway, there really isn't much they can do for an RV fistula- the success stats for surgical repair are around 30%. The plug doesn't usually "take" in an RV fistula, the other method of repair, where they pull a flap of skin over the interior opening isn't an option if you have any sort of active disease- the diseased tissue just won't graft or heal. Also, any surgery to repair fistulas usually involves cutting the muscles in the rectum, a standard fistulotomy- where they lay the track open & let it heal from the inside out. This can lead to incontinect issues- I already have those, thanks! The drugs they use, Remicade & Humira, are so-so as far as success goes- like I said, I've been on Remicade for years now with no closure whatsoever. If the fistula isn't bothering you, you can just leave it well enough alone. Which is what I've opted to do for now- if I ever do get a proctocolectomy, I'll deal with the fistula at that time. Also- the surgeon told me that I would never be a candidate for a jpouch- any surgeon hears "fistula" & assumes it's Crohns- which was sort of a bummer! But yes- both the CD forum on this board & the Jpouch.org forums have TONS of fistula info- although it's not too heartening- very, very, VERY few women seem to have had successful fistula repair in one easy step. You'll read tons of posts about plugs falling out, setons disappearing, etc.... Ugh.... yet another thing I've learned to live with.... Mine isn't so bad in that it only really bothers me when my UC is really active- on any given day it's nothing. I just wear pantyliners 24/7 to catch any drainage. Now does your GI think it may be Crohns? I have to talk with mine about possibly changing my diagnosis to Crohns, if I ever need to switch to Humira- already thinking about what may happen if Remicade loses it's effectiveness! The Remicade is about 50/50 for me now.

Eva Lou,
Was it your GI that put you on the Remicaide? I have so many doctors now that I am feeling a little confused as to who I go to for what. As you'll see in an earlier post I've had three GIs suspect Crohns and after three colonoscopies decide that it definitely wasn't Crohns. It seems the motto for UC is "Expect the unexpected!" so I wouldn't be too surprised if the diagnosis gets changed. Thank you for all of your information. It is very helpful.

hi there- yeah, it was my GI who put me on Remicade, & this was because I had become steroid dependent & refractory- not getting better & unable to stop taking pred. I didn't develop the abscess until about a year after I started taking Remicade. But no one knows who deals with fistulas- my Gyn wanted nothing to do with it, my GI wasn't interested, my PCP I never even told..... only a colorectal surgeon will deal with it. My GI also thinks it's UC for me, despite the fistula- I think the inflammation is constant, no skipped patches- the last scope I had showed about 10" of active inflammation. The only reason I'm interested in changing my diagnosis is if I ever need to give Humira a try- it's approved for CD, so..... Aren't the fistula threads depressing?!?!?! Jeez...... they get even worse over on jpouch.org! That's a big part of why I just chose to live with it- which sucks, but hey, it could be worse.

Eva Lou,
I just can't bring myself to even look at the jpouch.org. Colon surgery was a disaster for my grandfather and ruined his quality of life. I want to try the probiotics. What do you recommend?
Cynthia

I don't know if fistulas in UC are THAT rare, but yes- they are usually considered a sign of CD. Hence, the surgeons advice that I could never be a candidate for a jpouch- if it wasn't for the fistula I'd be a perfect candidate! I wouldn't say that the fistula developed as a result of UC, but it is too bad that it developed while on Remicade- it sort of blows that drug-healing theory out the water! And like I said, since I got the fistula I've probably had dozens of infusions with absolutely no change in the fistula. Blech! The surgeon I met with did say that it's possible for someone with UC to have a long standing fistula that causes no problems- generally in CD, the fistulas get abscessed, then drain, then get abscessed, then drain, etc. That's why setons are used, to keep the track open & allow constant drainage. As far as probiotics, it really seems to be trial & error- I've had pretty good luck with Culturelle & Ultimate Defense Critical Care, high bifido formula. But I really never know if I can attribute the lack of symptoms to those, or the other heavy meds. I know I've had symptoms worsen on some probiotics, like those Garden of Life junk capsules! I feel like it's going to be me & my fistula, 'til death do us part! Jpouch.org is a good site for info, but some of posts make you shake your head in awe..... some pretty bad surgery stories over there! Of course, one has to keep in mind that those with ideal pouches are probably not posting as much! But the fistula repair threads are just bad- I honestly can't imagine going thru a surgical attempt at repair now, after reading other people's experiences & looking at the low success rates. Yeah, it's sort of gross, but..... it could be worse! As long as it's not causing me any pain or other issues, it's deal-able!

pb4,
Both of your links are single patient case studies on a very rare type of fistula called colojejunal fistula. Springerlink is a fee based resource. It costs $34 to read the whole report. The second study from yamaguchi University was very well-researched, well-written and free. In addition to its single patient case study, it cited two large case studies by the Mayo Clinic (252 patients) and De Dombal et al (465 patients) concluding that the most common uc fistulas are rectovaginal (21% of first study which focused on researching repairing rectovagina fistulas)
)and anorectal (17.6% of second study which focused on anorectal abscesses, fistulas and fissures). Obviously the percentages are biased by the chosen sample group in each study. Publishing information was included in the study's footnotes.
It can be really hard to understand many of these studies. You always need to find out: who paid for it, what was the exact purpose of the study, how large was the sample group, how was the sample group chosen, if applicable was there an uncontaminated control group, have the results been reliably duplicated by others and published, how was the study received by the researchers' peer group, when was it published and has the research withstood the test of time .
I really appreciate your research and I enjoyed following up on it.
Thank you.

I agree completely. The more we know the better decisions we can make.

It was just diagnosed on Friday. Docs were hoping it was just a severe abscess. No talk of Remicaide. They want to wait a little bit longer before doing anything different.

Hi,

I'm an infrequent visitor to the site, but thought I would chime in with my own experience with uc and fistulae since there are so few of us.

I started with a large rectal abscess that required surgery and a three day hospitalization.  The infection made me really sick.   When I came home from the hospital a traveling nurse filled my wound daily with absorbant packing so that the wound could heal, "from the inside out" as they called it.  

Despite all those precautions the abscess never healed completely and I was left with the fistula from somewhere in my lower rectum to just outside my anus.  It weeped bloody goo all the time and was constantly sore.

I couldn't get rid of it fast enough.  As soon as I knew what I had I made an appt with a colorectal surgeon and made a date two weeks later for a fistulotomy which Eva Lou described in an earlier post.

What I have now is a long (thin and fairly deep) crevice running from rectum to anus.  And yes, sometimes stuff I would rather stay inside does ooze out on occasion, but it is very small amount.  It gets sore sometimes.  It did cut through my sphincter and I have minor issues with leakage with urge, but never enough to soil my underwear now that my colitis symptoms are not severe.

I have had two scopes with biopsies that came back as ulcerative colitis.

Also, fwiw, my regular GI admitted right away that he wasn't enough an expert on things like a fistula and that a colorectal surgeon was the doctor to consult for options.

Best of luck!  I hope you get this resolved soon.

I think I did a poor job of describing the "crevice"  It is healed. 

The crevice i spoke of  is the scar left from the surgery.

It is like a several inch long fold of skin that starts inside me and ends outside the anus.  It follows the track of the fistula.  If you think of a pipe that is split longways and the top is removed, the bottom will resememble a canal.  That canal is so narrow i think of it as a crevice and since it begins inside me a small amount of debris sometimes flows out, but since it is open on top nothing gets stuck in there to abscess. .  The area outside where it ends is sore at times too, but not often. 

It is not a perfect solution, but I prefer it to the fistula which caused me daily discomfort.  Also the type of  fistula I had was  not complicated like yours would be so I had an easy choice by comparison. 

Appropo of nothing:  it is amazing and surreal to me that I not only know what a fistula is, but that I have actually had one in my body.

madabs and pb4,
Thank you for your responses. I'm having a hard time dealing with prednisone withdrawal but the fistula is doing fine, no drainage for 5 days. My hands are extremely swollen so it is hard to type. madabs, your comments made me feel much better about living with this. Thank you.