A couple of questions. My son 15 has two perianal fistulas, both with setons placed in them back in July of 2015. One of them was accompanied with a very large abscess. First: how long do the setons have to be in? And secondly: the fistula with the large abscess is healing at a very slow rate, is this normal in Crohn's kids? We will be going to see his GI in two weeks to evaluate. They may or may not have to do some kind of procedure to speed up the healing process. He is on Humira and my daughter is on Remicadee. Her GI said that Remicadee is much more effective in healing fistulas than humira. Thoughts?
Darn fistulas
- Thread starter Gi-jo-mom
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Your poor son! My son does not have fistulating disease, but is on Remicade. And I heard the same about Remicade being best for fistulating CD.... It may have been on this forum....
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I've heard many parents say that their kids wounds can take awhile to heal.
I would think that's the case since your son is still in a flare.
I hope the GI has suggestions on healing it up faster.
I thought I also read that Remicade does a better job at healing fistulas
Mlp are we nuts?:ack: if we are... it's CrohnsKidMom fault for suggesting it first.
I would think that's the case since your son is still in a flare.
I hope the GI has suggestions on healing it up faster.
I thought I also read that Remicade does a better job at healing fistulas
Mlp are we nuts?:ack: if we are... it's CrohnsKidMom fault for suggesting it first.
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Hi Gi-jo-mom,
I'm sorry that your son is going through this. It's hard enough for me to deal with as an adult, so I can imagine how hard it must be as a teenager.
I have had a fistula with seton in place since Feb 2015. My gastro says he would want to see signs of it healing on MRI scans before taking the seton out, so there is no specific length of time. The last MRI showed the tract was still quite large with lots of granulation tissue so I just had an op to scrape some of that out with the aim to promote healing. Sounds like what Sascot's son had.
I am on Humira. I was given the option of Remicade or Humira and told they both work the same way so the choice for Humira was just one of convenience of injections over infusions. I'd be really interested if anyone could point me towards the trials showing that Remicade is more effective? My gastro has specifically said there'd be no point trying Remicade if Humira doesn't work, though he would try Vedolizumab (which as yet has no evidence for fistula healing).
I'm also on Azathioprine (Imuran?) and starting exclusive enteral nutrition (Elemental 028) his weekend. There's not much evidence for the EEN but I figure there's not that much risk either. Gastro thinks it *could* help.
I'm on metronidozole just a short course of 10 days at the moment which is definitely helping it to dry up and feel less sore since my recent surgery, and pentasa long-term. I'm starting to think I should get one of those signatures with my Dx and medications!
Hope your son starts feeling better soon
I'm sorry that your son is going through this. It's hard enough for me to deal with as an adult, so I can imagine how hard it must be as a teenager.
I have had a fistula with seton in place since Feb 2015. My gastro says he would want to see signs of it healing on MRI scans before taking the seton out, so there is no specific length of time. The last MRI showed the tract was still quite large with lots of granulation tissue so I just had an op to scrape some of that out with the aim to promote healing. Sounds like what Sascot's son had.
I am on Humira. I was given the option of Remicade or Humira and told they both work the same way so the choice for Humira was just one of convenience of injections over infusions. I'd be really interested if anyone could point me towards the trials showing that Remicade is more effective? My gastro has specifically said there'd be no point trying Remicade if Humira doesn't work, though he would try Vedolizumab (which as yet has no evidence for fistula healing).
I'm also on Azathioprine (Imuran?) and starting exclusive enteral nutrition (Elemental 028) his weekend. There's not much evidence for the EEN but I figure there's not that much risk either. Gastro thinks it *could* help.
I'm on metronidozole just a short course of 10 days at the moment which is definitely helping it to dry up and feel less sore since my recent surgery, and pentasa long-term. I'm starting to think I should get one of those signatures with my Dx and medications!
Hope your son starts feeling better soon
Thank you. He will be going to see the GI soon so answers will be coming. I hope.
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I think I'd just flat out ask the GI what kind of timeline you're on and when would a med change happen. I'd also make him aware that your son is getting frustrated. Most ped GI's are pretty in tune with the emotional issues of having a disease so young. At this age we need to watch carefully and make sure that frustration doesn't evolve into depression and other mental health issues. Does he see a therapist?
No he doesn't see one at this point. We just keep thinking that they will clear up. The good thing is that he's growing and no GI issues. I will be aware if that though. Thanks for bringing it up.
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Hi, I don't know about fistula in kids but my husband has fistulizing CD. He also had setons put in July 2015 and is on Remicade. His GI also said Remicade helps in healing fistula and the healing process is going pretty well. He said the setons have to be in for minimum 6 months after the first infusion, so he will be talking about removal pretty soon. I hope your kids feel better.
Darn fistulas is right! My son is also 15 and has had 4 surgeries for abscess/fistula problems. The seton placement is to keep the fistula track open so that another abscess doesn't form. Generally, once your disease is under control it should heal up, but sometimes these darn things have a mind of their own, and don't close like you think they should. (That's the boat that we are in)
We have had different types of setons placed. The setons that our surgeon used is like a thick piece of thread and it stays in until it falls out on its own (usually 6-9 months) the thicker bands we have left in anywhere from 6 weeks to 6 months, but depending on how bothered your son is by having it in that usually dictates how long it's left in. The surgeons we have seen have been really great about making it clear that it's up to my son how long they stay in.
I have talked to adults that have left them in for a few years at a time. It really depends on your situation. It's so crazy that our poor guys have to go through this stuff! Prayers to you & your son that you get quick healing & lasting remission!
We have had different types of setons placed. The setons that our surgeon used is like a thick piece of thread and it stays in until it falls out on its own (usually 6-9 months) the thicker bands we have left in anywhere from 6 weeks to 6 months, but depending on how bothered your son is by having it in that usually dictates how long it's left in. The surgeons we have seen have been really great about making it clear that it's up to my son how long they stay in.
I have talked to adults that have left them in for a few years at a time. It really depends on your situation. It's so crazy that our poor guys have to go through this stuff! Prayers to you & your son that you get quick healing & lasting remission!
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It might be worth asking about fistula plugs. My son was the first to have it done at our hospital. In theory they debride the inside of the channel then pull the fistula plug in and stitch it in. It is made of organic material so the skin is supposed to grow around it which closes the fistula. Unfortunately his plug fell out, but to be fair the company totally changed the design of the plug without letting the surgeon know. He was not happy with the new design. For us it helped anyway even without the plug. Worth a thought
Thank you. I think i will ask. My son was just saying yesterday that when he runs, in PE, the fistulas will bleed so he tries to avoid running if at all possible. I would really like for his life to get back to normal and see him be able to be active like a 15 year old should.
