04-19-2007, 07:22 PM   #1
Senior Member
Join Date: Oct 2006
Fistulae Suck

I've had a perianal fistula for a long long time, and suddenly i have 2 now OUT OF NO WHERE (its right next to the first one). what have you guys done to cope with this? im on 6mp
04-21-2007, 07:49 AM   #2
Hi Dekar, I had problems with perianal fistulae so I know how you feel. Also like you, I started with just one and then all of a sudden I had several, mine were in a horseshoe shape around my rectum, internally and externally. Its difficult to describe, but they wre complicated. I initially had setons fitted, which are rubber bands that are inserted through the track of the fistula to lay it open in the hope that all the pus will drain away and so the firtula will heal quicker. I had surgery a couple of times to have several setons fitted and eventually 12 months after the first one was fitted, it was decided that more major surgery was needed as the setons weren't working. I was taking Imuran at the time by the way, and I had had a course of prednisolone. So in June last year, I had a bowel resection, as the fistulae had spread to my small bowel so that part needed to be removed and I was left with a temporary stoma. So here I am, 9 months later and I am now waiting for reversal surgery to remove the stoma as my fistulae are now totally healed.

Apparently remicade is good for fistulas, but I haven't tried it, its also good to have lregular baths, it eases the discomfort and reduces the risk of nasty infections. Its better to try and get them seen to before you get to my stage. I hope this helps

04-24-2007, 02:50 PM   #3
wears odd socks
vickyoddsocks's Avatar
Join Date: Apr 2007
Location: Lincoln, United Kingdom
Hiya (im new! ) I had/ got the same thing , i have 2 peri anal fistulas which led to a very nasty abcess. And out of the blue i got a anal-vaginal one. I had setons in all 3 for 18 months, then went on the elemental diet ( just before having a colostomy) which healed one of the peri anal ones. There still there now. Ive also been on infliximab (remicade) to try and heal them but apparently its innefective if youv still got infection. Ive noticed with mine the elemental works wonders, but its not knowing how long you have to go on it for! I did it for 7 1/2 months before and it only healed one of them, which i think had reopened now anyway. Im confident that if i did the drinks for long enought it would all go but i dont have to motivation to do it as it would probably be AT LEAST a year.
Has anyone expeirience of them healing spontaneously!? (That might be being too hopefull!)
04-24-2007, 03:54 PM   #4
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TammySue62's Avatar
Join Date: Nov 2006
Location: hamilton, Ontario

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I too have been dealing with these dreaded fistulas also.
I have had 3 since last Nov. One anal-viginal and 2 on the
right butt cheek close to my anus hole. They constantly
drain and are very painful. I also am getting remicade infusions
every 8 weeks. This slows down the drainage for about 4 weeks.
Then they start to really drain. I often take sitz baths with epsom
salts to relieve some of the pressure and pain. I just had my remicade
on Tues; then I had a sigmoidscope with another new surgeon.He
also said this time the setons would not help that I would have to have
surgery. His words were removing my entire bum; left with a stoma and
bag. Not exactly what I wanted to hear. I have untill May 22nd when
I see him next with my answer.
I am so upset and scared and I really don't want this surgery.
I have to much going on in my life right now (or so called life) to make this
kind of major dissision.
I took my daughter to the Dr yesterday because she was complaining about
stomache pains, the big D,she has lost 10 lbs. in 3 weeks loss of appitite,
feeling sick so the Dr thinks that it might be some kind of IBS.
She is going to see my GI in 2 weeks for some more tests. I'm just
praying that she does not have this roller coaster of a ride disease.
I will let you know what happens.

04-24-2007, 05:01 PM   #5
wears odd socks
vickyoddsocks's Avatar
Join Date: Apr 2007
Location: Lincoln, United Kingdom
Hi Tammy, Im really sorry to hear about your fistula problems. I know ive already said this but i was in pretty much the same situation (a week away from having a colostomy) and i cannot recommend an elemntal diet enough. Within 2 weeks my pain from the abcess and fistulas had gone, and had stopped leaking completely. I have never tried being on both the elemental diet AND remicade but for me that is the next thing to try as i think it would work. As i said i was on the diet for 7 months and it made me well enough to come to uni and kept me very well for 2 years! It really is worth it.
I hope everything turns out ok, thinking of you!
04-24-2007, 09:08 PM   #6
Senior Member
DanSJVDavis's Avatar
Join Date: Jan 2007
Fistulae Suck
Yes, yes they do.

Knock on wood, I've only had one and they were able to cut/scrape it all out so it didn't reappear. I hope I don't end up ever getting another.
***22 or so years with the Crohn's monkey on my back, 4 surgeries, occasional joint and back issues, but still going strong***

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04-25-2007, 04:13 AM   #7
Senior Member
Join Date: Oct 2006
thanks to everyone who contributed to this thread. The pain and the draining of the fistulas do not bother me at all, as I'm extremely used to it now. But I do not want a surgery just to fix them, because I am perfectly fine with living with them at the moment. I just don't want the whole situation to get worse, IE get more of them because that can't be good, and prefer a more natural way of healing them overtime. I am considering an elemental diet.. I'd do it forever if it heals. Are there any other options I can consider?

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