Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.
Fistula surgery(7 Posts)
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.
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