Think my son has another fistula.

[Steve S]

Ugh.

So my son, Nathan, is 8 years old and had an abscess and fistula back in December. The way he didn't heal up caused his general surgeon to think he may have Crohn's despite showing no other signs.

He was indeed diagnosed with Crohn's and has been on Remicade since March 1 (he's had the initial, the two-week, and the four-week infusions...due for his fourth treatment in about three weeks).

Well, other than the original fistulotomy incision not healing up, things were going well until this weekend when another abscess seemed to pop up. We talked to the nurse and gave him three baths on Sunday and went to see the doctor on Monday. They thought it was too early to drain, so they put him on cipro to see if that could knock it out. We went back today and things seem to be the same as Monday. They seem to think he has a fistula forming, but our doc is referring us to a colorectal surgeon. We already know he's going to recommend a seton.

Here's the issue. We found this VAAFT treatment (very small camera used to seal up the fistula - basically arthorscopic surgery, I suppose, if not micro-arthroscopic) and sent it to his original surgeon yesterday, and she researched it and talked to the colorectal guy about it. Doesn't sound like he'd consider it (he wants to do a draining seton, most likely), but we haven't talked to him yet.

Sooo........any experience out there with fistulas? Seton vs. VAAFT? Any...absolutely any input would be greatly appreciated.

So discouraging to have this pop up 2-1/2 months after we started Remicade. Not sure if this means that Remicade isn't going to be effective for Nate (inflammation markers were gone last time, but he presents perianally, so not sure how big a deal that is). Now, he has been on Flagyl for quite a while since his original incision from December still hasn't healed and still drains puss.

Just not sure we're willing to set up a draining seton? How much drainage would there be? Does that mean he has to wear undergarment protection? Our heads are just spinning. Waiting to hear back from the colorectal guy about an appointment. They want us to see him before his cipro runs out (next week). I'd love to find someone in central Texas who would do the VAAFT procedure, personally, but I'm not sure that's even an option.

Ugh!

 

[Kelly2]

So sorry to hear that your son has another fistula forming. It is very frustrating to say the least. I noticed that you live near the world renowned Texas Childrens Hospital in Houston. Could you perhaps contact them and ask if any of their colorectal surgeons use the VAAFT procedure? The seton stitch is very helpful in preventing the build up inside the fistula which can be uncomfortable. It keeps it draining, and if you get everything under control with Remicade or 6MP and antibiotics, it will not drain. It will only drain if it has active disease, and in that case you would want it to drain out. I know there is another procedure called a fistula plug, which is performed more commonly than the VAAFT procedure, but they normally do not have as much success if you have underlying active disease present. I guess the best advice I can give you is to find out about VAAFT, and if that is not possible, then opt for the seton stitch. He will need it to keep the fistula draining, otherwise it will just cause an abscess. Once it has resolved, and is no longer draining, he can have it removed. The only other choice I can think of is the fistula plug procedure - but I would definately research the colorectal doctor and make sure he has plenty of experience with the procedure - even if you have to go to Houston.

 

[Jenn]

oh rats! So sorry for you and your son. No experience with either the seton or VAAFT, wish I could help more. Doctors recommended white vinegar in the sitz bath, it's a natural antibiotic. Please keep us posted to help educate us as I'm sure I'll be on this road too some time in the future. Your son's dx was similar to my son's. His first fistula was laid open with surgery after the abscess drainage wound didn't heal and followed up with GI and dx and healed. 2nd fistula was while on 6MP and oral antibiotics didn't help, we had to do 8 weeks of IV cipro and flagyl, but that worked. plus, he started remicade at the end of that. I was terrified he'd start another fistula when he built antibodies to remicade, but none so far since switching to Humira - knock on wood! Remicade should help prevent and close up fistulas, but maybe it was too far progressed for it to help yet?

Best of luck!

 

[Steve S]

Thank you so much for the input, guys. Kelly2, the fact that it would only drain if there's active disease makes me a little less standoffish to the idea because I was thinking I was we'd basically be putting in a drain that would do so (drain) until we did something else. Nice to know it may be there but not leak all the time.

Maybe someone can explain time frames to me on Remicade. Tam and I had a mini-meltdown yesterday as the frustration built. He started Remicade 2-1/2 months ago and things were slowly but surely looking okay...and then bam! Abscess and probably fistula? Really? We've changed his diet (paleo...mostly), got him on Remicade, Entocort, Flagyl (though he wasn't on it the whole time...only because the initial mid-December fistulotomy incision was still draining puss), iron, vitamins and fish oil. So we're wondering if this means Remicade is not working for him or if it's still too early to tell (he's now on the 8-week cycle after having the initial dose, one two weeks later, and another four weeks after that).

The only thing we haven't done is added probiotics because his doctor said there was some info out there that it may not be good for Crohn's patients since part of the disease is the fact it attacks good bacteria, so adding extra good bacteria may actually incite a flare-up...though he said it was just conjecture at this point. Is there a general pro-Probiotics stance in the IBD community or anti-probiotics stance (would that just be a biotics stance since anti and pro cancel each other out?....anywho).

Thanks again for the input, y'all....it's really helped quite a bit already.

Good God this forum is great...8^)

 

[Sascot]

Hi Steve, sorry to hear about the new fistula. I know where you're coming from - I am demented dealing with my son's fistula/abcess which has been grumbling for about 4 months now. I feel sooo sorry for him as he constantly has yucky stuff draining out of his bum cheek (sorry if too much info). So far he has been on Flagyl since February and it's not noticably better. We have just started Aza so I am really really hoping it may help it to heal.
The surgeon mentioned he may need a seton but so far has not had one - just the surgery to scoop out the abcess and the constant dressing/packing for the last 3 weeks. Well I see the nice little stabby face which will make me feel better so :voodoo::voodoo::voodoo:
Hoping we don't end up with a seton tomorrow when we have a clear out of the abcess under anaesthetic.
Good luck - hope it resolves soon!!!

 

[Jenn]

> anti-probiotics stance (would that just be a biotics stance since anti and pro cancel each other out?....anywho).

LOL!

Alex was on probiotics and I saw neither harm nor help from them. He had a high b-12 level and the GI thought maybe it was bacterial overgrowth, but breath test was negative. we took him off them. Just put him back on Primal Defense though, figured it'd give his immune system some help while fighting off pink-eye.

I think the response time for Remicade is as individual as the disease for people. Alex felt better in under a week and was amazingly better a month out. Sounds like your son has some healing to do, and both the disease and remicade probably make that take longer than average. So frustrating! Does his bloodwork show a good response? That seems the best way to know remicade is working. Hang in there!

 

[Steve S]

Hey, Jenn.

Yeah, his markers were at zero the last time we went in (the inflammation Crohn's ones), so that's good. He never had stomach issues that we noticed (though you might not tell it from the pictures we saw from his endoscopy and colonoscopy). Maybe it just takes longers because of his perianal, fistulizing presentation....oh, so frustrating. We're still waiting to hear back from the colorectal surgeon. I'm just so apprehensive about letting them put in a draining seton, though I've yet to see a better option. I'm wondering if we shouldn't just wait as long as possible (Tam read something about Remicade taking up to a year to help with fistulas) so that we can delay surgeries as long as possible.

We are most definitely trying to hang in there, though.

 

[DustyKat]

Hey Steve,

So sorry to hear that Nathan is having problems again.

I don'y have any experience with Remicade or perianal abscesses at this end but it may be worthwhile also posting your question in the Fistulas, Fissures and Abscesses Forum.

Good luck!

Dusty. xxx

 

[Sascot]

Hi, I was at the kids hospital on Thursday this week and I spoke to the surgeon about VAAFT to see if they use it yet. He had actually heard about it and I think he knew someone who has started using it but only on adults so far. Hopefully in a couple years it will be more widespread. Hope your son's abcess settles down.

 

[zinski777]

Hi Everyone I am new here and struggled with whether I should reply to this forum because my advice is an alternative to drugs and surgery. My heart breaks for parents who are dealing with issues like fistulas with their young children. I know first hand the stress, worry and heartache of dealing with this.

My 16 year old daughter has a fistula that began as a perianal abscess in Jan of 2012. This has been such a nightmare for us and affects her in so many areas of her life....it is painful, embarrassing and of course it drains a lot.

I just want you to know that we have seen a great deal of improvement recently by doing a more natural approach with her. You see I have recently discovered that her gut problems, inflammation, diarrhea and fistula may be the result of a damage mucous lining (imo the lining can be damaged by antibiotics as well as other drugs like pain relievers, steroids etc).

We are using aloe vera internally for the inflammation, in addition to high quality pro-biotics and colostrum to re-build the damaged lining. We are seeing a great deal of improvement in just under a month. The fistula appears to be closing, her pain is almost gone and her diarrhea is lessening.

Please research these concepts and consider this theory because it breaks my heart to think of these kids going through these surgeries and never really getting healed. I pray this info will help someone and if you want more info please message me.
God Bless:rosette1: