13-year-old son's fistula wound not healing

[tnatatude]

My 13-year-old son has had two fistulotomies for a perianal fistula (it reformed once). This has been going on for a little over a year. The fistula has not reformed for a 3rd time, however, we are having a lot of trouble getting the wound to heal. It was left open to heal from the inside out. We recently started going to a wound care office where they started him packing the wound with the aquacel gauze stuff that is activated by saline solution, but today the doc said he didn't think that was helping a whole lot. He is now going to use a cream and sitz baths with a capfull of bleach. He suggested we talk to his gi doc about switching him to Remicade. I'm scared of Remicade because from what I understand, once you start that, you can't go back to the pills. Any advice from anyone desperately appreciated!!!

 

[tiloah]

Don't fear the Remicade! It sounds like your son really needs it right now. It's a good drug that has helped a lot of people. You can check out the Remicade subforum too if you want to hear experiences with it.

 

[Mark63]

Hi,

Sorry to hear that your son is having such a hard time. I'd certainly follow the advice over wound care, but adding bleach to the water is not one that I've come across before? If the Aquacel was a blue/grey colour, it contains a small amount of silver which is a very good antibacterial agent.

As for Remicade, don't be scared of it, be cautious, do your own research, talk to the GI and see if he really feels that this is the best treatment for your son at this time. It's not a case of you can't go back to "pills", but if the medication that he is currently taking is not working, then it's time to move on. Perhaps in another phase of the disease "pills" will be appropriate?

Mark

 

[tnatatude]

He is taking Azathioprine now. His levels are good except for iron (anemic) and the last blood draw showed low growth hormone levels. We are heading to an epidemiologist in a couple of weeks to possibly start growth hormone treatment. The main reason they are suggesting the switch to Remicade is to help the fistula heal. When he was first diagnosed (about 2 years ago), he had 3 fissures and one developed into a fistula. If this could only heal, I would jump for joy! He's a great kid and is not letting Crohn's stop him - black belt in TaeKwon Do, plays soccer, in the 8th grade, etc. I know we're very lucky the fistula wasn't internal and his Crohn's isn't a lot worse, but I want him to have as much of a normal childhood as possible and frankly, this sucks. I'm feeling better about the Remicade. Thank You!!!

 

[Crohn's 35]

:welcome: I know you are scared and I would be too for my child especially at such a young age. This is a really hard for him and peer pressure comes with stress and stress causes flares...vicious cycle.

I agree with the others Remicade is the best thing for what he needs to fix him up. Usually by the 3rd infusion he will know if it is going to work. Good luck let us know what you both decide.

 

[DustyKat]

Hi tnatatude and :welcome:

I'm so sorry to hear about your boy. :hug:

As the others have said Remicade is proven to be very successful at healing the fistula's that go along with perianal Crohn's. Since the wound is not healing it is probably suggestive that the Crohn's is still quite active and that will also affect his growth. So treating the Crohn's effectively is usually quite beneficial in other areas as well.

I have also not heard of using bleach for wounds and personally I would not do it. I deal with wound management in my line of work and I can't see how bleach is in any way beneficial to wound integrity. Bring the Crohn's, and therefore inflammmation under control, and the wound will heal.

Good luck Mum, I know these decisions are so damned hard to make.

Dusty. xxx

 

[tiloah]

Oh I'm glad you weighed in on that Dusty. I was thinking that myself but I just didn't know enough about it to go against a doctor's advice. I have never heard of bleach being used in wound care. Maybe the doctor meant use a cap full of bleach to clean the sitz bath afterwards?

I would give the wound care clinic a ring and see if they agree with the doctor? It just rubs me the wrong way.

 

[Mark63]

Dusty, yes, I meant follow the general advice on wound care, thanks for the clarification. Perhaps they meant a Peroxide based, rather than a Chlorine based product? Anyway, still not a good idea as there compounds involved that you don't really want to come into contact with.

 

[DustyKat]

Hey Mark,

You are right, even though peroxide was used on wounds in the past it is no longer an accepted practice.

Dusty.

 

[Dexky]

Hi Tnatatude! I don't know that he couldn't return to the pills after Remi, but I don't think he can stop Remi and then return to it later. Once off it, the body tends to build up anti-bodies to it. At least, that's my understanding. Remi also seems to be the best crohns med for treating and controlling fistulas. All these meds are scary as hell but we have to do what's best for them! Good luck and welcome aboard!

 

[RFarmer]

Hi tnatatude,

I recently got started on Humira after dealing with a non-healing fistula. It definitely helped. I'm pretty much pain free, and mostly healed. I have a seton in the keep it from closing though, which I think impedes how well I could heal.