Fistula surgery

[BlackSwan]

Spending Christmas day worrying about upcoming fistula surgery for DS, 5. Very fearful of risk of fecal incontinence. We have already had surgery for an abscess... but it has now formed a fistula. Anyone been through this with a similar aged child?

I hope ds had a great Christmas. Please ignore Mr Google. Children are very different from adults, hence the need for specialist training. Incontinence is never a problem in children, but finding the internal opening can be problematic. If ds bottom is behaving itself when called for pre-op might be worth asking if the op is better deferred, the ideal time for the op is just as another abscess begins to form or at very least fistula actively discharging. Good luck, he'll be fine and you might eventually get over it.

You are so kind to respond dratsea, that's very reassuring. The surgeon was surprised it had formed a fistula as he couldn't feel any passage up to the bowel when he removed the abscess. But an MRI showed it's clearly there. It has been actively discharging, but right now isn't causing him any discomfort. I see what you mean - so you would defer to ensure it's possible to make out where the internal opening is.

He's had a great Christmas!

He still has a lot of growing to do and it may settle without surgery. I have to admit that most of my experience predates MRI and hopefully the surgeon, though surprised, has experience of finding the tract shown on an MRI in a 5yr old. I know that in adults an MRI can be helpful planning surgery to have a "map" of where the fistula is in relation to the various sphincters and where the internal opening is likely to be. In 3/4/5 age group the internal opening is often tiny, always at 6 o/c and the tract very "shallow". My professor of surgery once asked the students on a teaching round where they would put their hands to drain something similar to a fistula. The correct reply was "in your pockets and then sit on them!" I cannot give you any advice (as I have hung up my scalpel) but if the thought of surgery worries you, and ds is perfectly well and continues to be so between now and when you get to the top of the queue and the suggestion is made to defer, on the grounds it will be much easier to find while symptomatic then is it a reasonable option to defer. I had a number (double figures but less than 20) who had had several operations but nothing was found, continued to get abscess/discharge and came to me for second opinion. They were worked up for surgery and the mums could phone up/email and get put on my next list. The op, if there is something in the tract to "milk back up", took only a few seconds and none of these then came back. Good luck!

Glad he had a good Christmas, 5 is best age ever for Christmas (unless it gets even better as a grandparent but dc both seem too busy with other things!)

I wish we were in the 'usual' group - but we rarely are! With DS it's transsphincteric. Did you see many of this for this age group? Would your approach have been any different? Chrons has been ruled out. The surgeon proposes a cutting seton.

We have been through a lot of surgery/intervention with DS, totally unrelated...craniopharyngioma. That's all under control -I just don't want to add to his woes.
If we left the fistula, will it get bigger? Or may it just keep to it's size and drain intermittently?

Thanks so much.

None in children that young, anal Crohn's tends to be in late middle age but it is good that it is ruled out, sounds the right treatment and interesting about the craniopharyngioma. This is NOTHING to do with your ds but if you Google VATER or now known as VACTERL this "syndrome" is a collection of problems which often co-exist and the feeling is that the organs involved are all developing at the same time when some external event happens, I always described this to parents as the tiny embryo was hit by a neutrino. So it is possible that there is a link, a "hit by a cosmic ray" initiating the craniopharyngioma at the top end and simultaneously causing a minor developmental anomaly at the other end. I only bring that up to say the advice I would have given for the usual infant fistula is meaningless in the case of your ds and please ignore. My first thought is that it may actually be very easy to see the internal opening and the second is that if this is significant and has already got into the sphincters then the poor boy is unlikely to settle without surgery. Good luck.

That's very interesting - yes who knows what caused this in the beginning, it makes better sense to me in a way to see this as part of a whole body development problem or issue than random rotten things happening to one child. It makes me wonder what's down the road though!
We're very fortunate that despite all this he is doing very well. As I type he is busy designing his futuristic house. We hope he remains resilient and overcomes this with the surgery. Thank you again for your thoughts on this.

Can I ask what happened with your son? Did the surgery work? Has he developed Crohn's or had any other issues with abscesses or fistulas since? My 4 year old son has the exact same issue but his fistula in intersphincteric. It's so rare for their age. Thanks so much!

Hi Saramt, just saw your message as I happen to be online. Yes it did work - thank goodness, he's now 13 and no further problems. He was investigated for Crohn's but nothing turned up. We held our breath for a long time just waiting for more issues but fortunately that hasn't come to pass.

It was a really stressful period. Is your son having surgery? I hope he's doing ok.

Thank you so much for replying! It is so stressful especially because it's so rare in older children. You are the only Mom I could find who went through something similar. I'm so glad to hear your son is ok. It gives me hope. We were also investigated for Crohn's and so far everything looks good. My son developed a perianal abscess out of the blue when he was 3 and it developed into an intersphincteric fistula. Is that what also happened to your son? He's 4 now and has had it for a year. The surgeon wants to do a loose seton. What exactly did your son end up getting? The cutting seton? How was recovery? Did the seton bother him? How long did it take after surgery for the fistula to close? Thanks so much again! This is so helpful.

I'm sorry you're going through this. My son had a loose seton also, though it was his second surgery: at first they thought it was just an abscess so they just cleaned out the abscess but of course it refilled once the wound healed. It turned out it was a complex fistula.

The surgery involved cutting through & leaving an open wound about an inch long, poor darling. Your surgeon has probably explained to you but surprisingly, given where it's located, the wound doesn't usually develop an infection (which naturally worried me) though you do need to keep it clean after he goes to the loo. Not going to lie, it is confronting to see and the first few days were uncomfortable for him, but we made it through.

As I remember it, he was given movicol so he would have soft stools so as not to be too painful. I bought a plastic sitz bath from amazon to help rinse him also (of course ask your surgeon what they recommend). I found that handy.

Try not to worry too much, I know that's impossible - but it's apparently an ancient procedure, tried and tested. Fingers crossed you will be past this soon.

When is he likely to have it done?

That sounds so hard! These poor kids. He's supposed to get the seton placed in a couple months. They're going to do exploratory surgery to make sure the fistula matches what it showed on the MRI and then place it. Thankfully we didn't have to do an initial surgery for the abscess like you did. The surgeon just pricked it with a needle and let it drain that way- although I wonder if that's how he developed his fistula in the first place.

What was the recovery like from his second surgery where they just placed the seton? How long was the seton in place for and was it easy to care for? Once it was removed, how long did it take for the fistula to close? Sorry I'm asking so many questions. I'm just so confused how a loose seton can close a fistula tract. I really really appreciate your time and support!

God, apologies, in the intervening years I've forgotten - now it's come back to me - in the end he had it layed open, not a seton. Sorry, it has been a while.
So I don't know if your son's wound will be similar.

With laying open they cut through from the fistula opening up through the tract, all the way to the anus. Sorry TMI. It healed up over a matter of weeks.
Has the surgeon said why he thinks a seton is the right way to go?

Ooh ok that makes sense! That seems to be the way to go in terms of best chances of healing but my sons surgeon said because his fistula goes through his sphincter muscles they won't lay it open. They're worried about fecal incontinence. Did your sons go through his sphincter muscles at all? Were they worried about incontinence after the surgery? I wonder why my sons surgeon is being so conservative. Did your son see a Pediatric colorectal surgeon or just a general surgeon. Our surgeon is just a general one.

I went back and had a look at the notes - the fistula did not cross the entire muscle, but the risk of incontinence was discussed & the surgeon didn't think it was likely. We saw a colorectal surgeon, Mr Curry at Great Ormond St.

There's no easy answers or great options here. But I would definitely try to see a colorectal surgeon if you can for a second opinion.

I'm SO sorry I'm just getting back to you! Both my kids are really sick and I'm in survival mode over here. I really appreciate you looking at your notes- that was so kind of you! You've been amazing and so helpful. I'm going to get a second opinion from a colorectal surgeon and go from there. I really hope we have similar results to you and we can get surgery and finally move past this. Take care and be well! Thanks you so much for your support!

Don't worry! Life is busy! I'm sorry your kids aren't well - I hope things are better by the weekend for you.

I think it's sensible to get a second opinion, particularly if you're not under major time pressure for surgery. Wishing you the best of luck, fingers crossed it's one procedure & it's all sorted. Let me know how you get on.

Thank you so much! You have been so helpful- I really appreciate it! I'll definitely update you. Take care!