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Input from others with perianal fistulas. My 15 yr old was recently diagnosed with Crohns in Oct 2012 and her first presentation was perianal fistula. In and out of hospital for abscess drainage and packing only to reabscess after packing out and end of antibiotics. On Remicade(three loading doses) and went on our qwn to Vandy for Seton placement in two fistulas(one missed by previous surgeon). Her pediatric GI had a fit that we had these placed. Is he correct? He said he could cure these with biologics alone. True? She was looking horribly prior to Setons. Pain was bad in beginning but dissipating now.

 Reply posted for pipmom.

Hi, just wanted to add our experience with perianal fistulas....my son was diagnosed with Crohns  in 2008 at age 10 with a fistula.  We began on Flagyl and packed it for a couple weeks.  He also started Remicade.  Remicade was effective, but to keep the fistula small he had to receive treatments every 4 weeks.  After 1 year he had to stop Remicade due to antibodies.  The fistula never completely disappeared during Remicade. In fact, it was a very good indicator of whether or not his inflammation was under control, or not....closing right after treatment, and opening as the next scheduled treatment date approached.  Anti-tnf drugs like Remicade and Humira are most effective for fistulas, but they don't necessarily make them disappear.  We had a seton put in, and we began Humira.  The seton was eventually taken out after many months, without having the fistula closed completely--certainly it has been much smaller and is rarely painful, but still present.  He has not had trouble with infections of the fistula since he was initially diagnosed.  I think a seton together with Remicade or Humira is  a good idea especially if your daughter is having trouble with the fistulas having infections.  The seton won't hurt anything, and can keep it draining so the fluid does not become trapped in pockets and become infected.  Everyone's situation is a bit different, but it sounds like you are being proactive, and that is good.

 Reply posted for pipmom.

My nearly 12 year old son has had Crohn's for nearly 4 years now, and he was diagnosed because of a perianal fistula.  I don't think there is a simple answer about the placement of setons versus use of Remicaid alone for healing fistulas, because every person and every case is different. 

Remicaid does indeed have a good track record for healing fistulas, but in cases like my son's it didn't work.  He was on Remicaid for two years, and then his original fistula started getting infected again.  He needed to ave a seton drain placed because he kept developing severe infections in his fistula. 

If your son was getting infected, felt better while on antibiotics, then started getting infected again within a week of stopping antibiotics, the fistula is at the point where it needs to be drained because the Remicaid can't touch it at that point.  If he didn't have an acute infection and had just started Remicaid, then I can understand why the doctor thought he should have waited to see if it could work its magic.

Good luck, this is a horrible thing our kids have to endure :-(

 Reply posted for pipmom.

Hello,

  I would like to offer some encouragement regarding fistula's. My now 21 yr old son was diagnosed with Crohn's disease 5  1/2 years ago and he also had anal  fistula's. The only thing that has worked is Remicade . It really knocked down the inflammation. He did have surgery to just clean out the fistula , remove some skin tags and close it up about 3 yrs ago and the surgery although unpleasant, was a complete success. It took almost a year to heal completely up (the surgeon didn't mention that of course)  but the bleeding/drainage stopped. Interestingly enough, he was 2 weeks late getting his last Remicade infusion and his fistula started to act up so it is very important to have your infusions on time. It takes time to figure out what works as far as  medications so hang in there .
 

 Reply posted for pipmom.

I suffered from UC for 3 1/2 and then started researching online. My husband was my donor and it has now been almost 4 months of being back to normal, having normal bowel movements - no gas, no cramps, no urgency, no blood, etc.  I am back to eating anything I want after 6 months on the Specific Carbohydrate Diet. I have even been eating some things that are considered illegal on SCD, but with no problems.

If you would like to read my story and see links to other articles, email me.

Just don't give up thinking it is hopeless - there is another way. I am not on any drugs and completely symptom free.

These digestive issues are caused by a imbalance in the bacteria in your gut, most likely from antibiotic use or sometimes food poisoning.

Just google Fecal Transplant and you will find how it is being used to heal digestive issues - I had UC and it healed me.

Email me for a link to my blog - kwi_sky@yahoo.com

Teri

 Reply posted for pipmom.

Truth is to my knowledge fistulas are very stubborn, they will continue and they will reform, from what I heard remicade has a fair chance of "healing" them but other than that all I know of is surgery to get rid of them. And even then then can reform. With a quick search on the web you should be able to get a little more information on what you need to decide how you want to go forward with this. I myself hate being lead through the years of "let me try this" bull. I have yet had any medication help any of my problems other than the mild side effects and been fighting this for 14 years now. I know it is sad to say but in this day it is hard to find a good doctor that will cut through all the "lets try this" stuff. Always question your doctors like you are doing now, there are those while good doctors, seem like once they figure one thing out they get blinders on and wont look past what worked to find out why something else is not working. Anyways good luck with this all.