Seton - 3 months later, still draining?

[lovelyss]

Hello - I love this forum so much.... of course nothing gets done around here because I could literally spend hours reading and learning... however - on to my story.

I originally posted on the Crohn's Discussion Forum regarding my daughter's Crohn's diagnosis. She is 19 - healthy as a horse and doesn't have any other symptoms of the disease save this darn recto-vaginal fistula. The diagnosis came after a misdiagnosis of a Bartholyn's Cyst right before she was getting ready for her first year of college last September. Further tests, etc (colonoscopy, MRI's) showed that she had signs of Crohn's. The first doctor we took her to (we tried to stay local to her college - which was about 2.5 hours away) put her on Pentasa and Entercort but as we didn't trust the diagnosis as she had no other symptoms, we took her to Boston - the doctor there wanted to go right to the big guns and start Remicade. We didn't want to go there as again, she had (and still has) no other symptoms.

We visited a colo-rectal surgeon at the hospital and opted for the seton surgery - day after the crippling Patriots loss to the Jets on Feb 6th! Well, here was are three months later and she is still draining - is this common? She wants the seton out. I keep telling her that it needs to stay in there and she is so distressed that it continues to drain (the draining happens from her bum - before the seton, the right side of her labia (sorry, TMI) would get very swollen and when she lightly pressed on it, she would drain from her bum - now at least, she doesn't get swollen as the seton just keeps her draining.

I just don't know what to tell her - is 3 months common for a seton to drain - what if it doesn't stop draining? Is there another option, other than biologics that can help her? I realize these are questions that I will ask her doctor at her follow-up next week... but I just wish I had something positive to tell her.

The fistula itself is miniscule - there's a teeny bit of what looks like wire tie that I think connects at the bum?

Any advice? Guidance?

Thanks so much! Maria

 

[Sascot]

I understand your reluctance for your daughter to have to take the medications when she is otherwise well. I have really, really struggled with this as well as my son (13) developed a peri-rectal abcess and fistula. Other than that he is fine - no tummy pains, no "toilet issues" - nothing other than a little bit of tiredness. His blood tests are all fine (apart from low iron).
He was managing without any medications but with this fistula/abcess they wanted him to take Azathioprine which totally freaked me out due to the scary side effects. I have reluctantly agreed and he is on his first week (I am watching him obsessively).
My argument with them and my little internal stressing was that maybe the surgery would have been enough but I suppose the Crohns must be active for the fistula to have formed in the first place.
I know it is difficult to decide but it isn't pleasant stuck with a constantly draining fistula (as my poor boy knows) and apparently kids with Crohns take a really long time to heal. From reading around this forum, Remicade does seem particularly good with healing fistulas, so maybe it is good to start there. Good luck with the meds if she starts them.

 

[ontariomom]

Hi!
I have two peri rectal fistuals. I have a seton on one side. I have not had my official dianogsis so i have had no treatment.

I got my seton in June 2011 and still have it in, and it still drains on occasion. Both sides drain on occasion. BUT i will say that i no longer notice it. I havent noticed it in months. It is honestly just part of me and it no longer bothers me or do i even think about it. The only time i am irritated is after a day or two of constant BM and then i find my butt cheek aches. But i sit on a heat bag and the heat really really really helps.

If she is being offered treat ment to close her fistuals, i would do it in a heartbeat. Even though i am not really bothered by my fistulas doesnt mean i would do anything i could do get the healed and get this seton out of me.

And i had no other symptoms for one year. I had a large abscess(fist size) then ended up with 2 fistulas and had diahreea issues. But other then that....nothing. NOw in the last 4-5 months i have had a variety of other symptoms.

So yes my fistula has been draining for over a year. It did settle right down after about 4-6 mos and like i said rarely drains unless i am over active or alot of diahreea.

Good luck and i hope you find what works for you!

 

[Jocky]

Hi Lovelyss, i've had a fistula for about 6-7 years now and i've lost count of the amount of setons that i've had. Some have only lasted a couple of weeks but most stay in draining for a few months, my last one stayed in and continued draining for well over 6 months:eek2:

As for medication, the remicade worked well for me and it almost healed my fistula completely untill i had a bad reaction to it and everything flared up again. I'm now on Humira (adalimumab) to see if that does the trick. I think the biologics are the best option for fistulizing crohn's, remicade and humira are the only ones available in the UK but in the US there are a few others (Cimzia, Stelera, Tysabri) to fall back on if the main two don't work. As a last resort you could always speak to a surgeon about grafts, i guess it all depends on how badly this is affecting your daughter's wellbeing. Good luck

 

[AlliRuns]

I have had two setons since Feb of this year. One Fistula was fairly simple, and the other was quite complex. They both still drain daily, though the complex one hurts and drains more. My C-R surgeon said this is normal, but I was also put on antibiotics because they are still draining a fair amount of pus.

 

[lovelyss]

Follow up - We ended up having a follow up with both the Crohn's specialists and the ColoRectal today - the Crohn's drs are still very pro-remicade - even though my daughter is still symptom free of Crohn's save this annoying recto-vaginal fistula.....we just don't want to get her started on this when she has never had another symptom of Crohn's - so hard and frustrating... Then, onto the colorectal surgeon who placed the seton in February - she was very sympathetic to us and offered to try a LIFT procedure. I guess there's about a 60% success rate. At this point we just don't want to start remicade when she is otherwise completely healthy. The doctors tell us that they don't run into cases like hers very often - normal bm's, no pain, no blood...she's solid as a rock... she will have the surgery on June 25th. Praying, wishing, hoping like h*** this is her answer.

Maria