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Posted 2/18/2009 1:04 AM (GMT 0)
I recently had surgery to remove an abscess, which formed into a fistula, and had a surgery to close the hole, but the surgery was unsuccessful. The doctor told me before hand that success wasn't likely, but after the surgery, he said he had closed everything up on the inside, and it would be ok. But a few weeks later the fistula started to ooze again. The doc said he didn't have to cut any muscle, and that I should go on Imuran, however, 3 of my siblings have tried imuran, and all 3 had adverse reactions - pancreatitis. Anyways, im going to see the GI but am going to request some other drug or surgery. Has anyone had success with these? and if so what did you do? does anyone have any suggestions. Thanks!
Posted 2/18/2009 1:34 AM (GMT 0)
Hi ROIDS,

Did you have the advancement flap proceedure? My colo-rectal surgeon said it is only about 70% successful in patients with CD. He said he wouldn't even try it until inflammation was gone and the ulcer in the rectum was healed (where the fistula/abscess starts). Meaning the fistula would be open but the surrounding tissue would not be ulcerated. I am surprised to hear your doctor tried to seal up the fistula at the same time you had the abscess dealt with. That seems too soon.

My doctors put me on Remicade and then Humira because they have been shown to heal fistulae for many people. Unfortunately, I'm allergic to both. So now I am on 6MP (which is basically Imuran), but it doesn't have the same record of healing fistulae. Flagyl also helps heal fistulae, but it not as good as Remi or Humira. Did your Doc suggest Remi or Humira? Also, when you take Imuran/6MP, you start at a low dose and work your way up. You get blood tests once a week until they can see that your liver and pancreaus will be OK. Then blood tests every 3 months or so to monitor your blood.

I would ask your Doc about Remi or Humira. I think I would also get a second opinion from other GI and colo-rectal docs.
Posted 2/18/2009 3:24 AM (GMT 0)
Hi Roids, I have had an anal fistula removed in 2007. It was a few months unitl I said to my GP that there was a problem down there. After I went to the hospital the GI had a look and booked me in straight away for surgery. The hole was left as an open wound and everything was successful. I had the wound packed with gauze every day which was painful and bathed in a salt bath a few times a day. In a few weeks it healed very well. My sister has also had a fistula removed but I'm not sure how that went though I was so young at the time.

Sounds like you need another GI. I was on sulfalazine and found I was allergic to that so they prescribed me with mesasal, I take 8 a day.

I have noticed alot of people on here are in the States and have remicade? I have read up on it since. Maybe you could ask your Specialist about Mesasal apparently it is the same as Asacol.

Posted 2/18/2009 3:30 AM (GMT 0)
I'd see if you could get on remicade, since it's suppose to be very good in healing fistulas.

Humira helped my fistulas a little bit. They were only mildly irritating, and didn't drain a lot. When I changed my diet to SCD, they healed completely. I'm knocking on wood that they stay that way.
Posted 2/18/2009 3:42 AM (GMT 0)
I had my fistula surgically fixed, only they did a fistulotomy. Where they open up the fistula track, which does leave you with a gapping wound down there. This lets things heal from the inside out. Mine was successful, and I haven't had any problems in years now. It did take an EXTRA long time to heal though, and I contribute that to Crohn's (wasn't diagnosed yet).
Posted 2/18/2009 4:43 AM (GMT 0)
Yes he tried to do the flap surgery. I am going to talk to the doctor about remicade, as that is what he suggests due to the prior history of my 3 siblings. All 3 have tried Imuran, and all 3 have had pancreatis due to its use. The blood tests dont prevent the effects from occuring, they just try to minimalize the damage if they do occur, and although my brother almost died, they caught it in time. Either way, this is about that darn fistula, just to be clear, a fistula is when the cavity connects through to the intestine correct? Cause thats what I have and its draining, they tried to let it heal from the inside out, and I was on flagyl and that did not help. The ooze stopped for about a week after surgery, but then returned after. I am currently on Pentasa, and have been lately experiencing boughts of insomnia, which I havent had in the past. I wonder if it has anything to do with the hole left from the fistula. Hopefully Ill be able to talk to a new GI here in the next few weeks. Oh and I also have throat tightening, close to when I go to bed, which prevents me from sleeping too. I wonder if this has to do what ive been reading about acid reflex, ill be sure to mention that to the doc when I see him. Thanks for all your input!
Posted 2/18/2009 4:46 AM (GMT 0)
Oh and fall colors, the doc mentioned that the ulcer was still in the area when he did the flap surgery, not sure if he knew about waiting for that to heal though, as he said they "found" and ulcer when they went in to do the surgery... but that it wasnt anything too harmful... do these ulcers always occur with fistulas? Seems like some of my old doctors were not too bright, luckily I moved out of that area and now will be seeing some new GIs, hopefully they are better
Posted 2/18/2009 5:56 AM (GMT 0)
Did they just leave the track wide up, like a big hole down there? That's how mine was like. I'm not familiar with the flap surgery. I know they can deal with these in many ways. Seems like a lot of the time they are hard to clear up. :(
Posted 2/18/2009 12:43 PM (GMT 0)
Hi ROIDS,

I am now wondering if we are talking about the same type of fistula. I was talking about a peri-rectal abscess and fistula, where the fistula starts in the rectum and exists to the skin adjacent to the anus. In my case they exit in the perineum. Is this your type? Or do you have a fistula in your abdomin? Either way, Remi is the preferred drug for healing, although it doesn't always work. If the start of fistula is closer to the anus, they can do a fistulectomy that Jen77 described. Mine starts high in the rectum and they would cut too much of the sphincter muscle with a fistulectomy and I would be incontinent. So the advancement flap is my surgical option :-( I don't know much about abdominal fistulae, but there have been posts discussing them.

My doc said the tissue around the fistula's opening was ulcerated, meaning it was inflammed and irriated because of the fistula and abscess. He said the flap is taken from the tissue around the fistula, and the tissue has to be healthy to start with so the flap can heal properly. Thats why he was going to wait until the ulcer had healed before attempting the advancement flap procedure. He also said he would require 3 weeks in bed for the advancement flap procedure. He said the best chance of getting it to heal was to be very quiet for 3 weeks. The other thing he said was that if it didn't work, you can try again. So maybe you can get on Remi and let the whole thing heal for a good long time and then try again.

Hopefully you can find a GI and colo-rectal docs who know CD. Very important because we heal more slowly and differently than non-CD folks, and the surgeon needs to be very conservative (cautious) about cutting. I suggest looking at a university teaching hospital because the docs are on salary and therefore don't need to do surgeries to pay their salaries -- they can focus on the right treatment which may not be surgery. They also tend to collaborate/talk to other doctors as part of teaching and knowledge sharing, and are up on the latest practices. I'm hoping you can find a good one!
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