• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Seton since Monday big time draining

Hi folks.
I am a 45 year old male. I got a fistula diagnosis approxiately two months ago. No Crohn's most likely (have not tested though) since i have no real symptoms.
Just had a seton surgery on the 31st of July. Overall it was not that bad. The surgery was brief, and afterwards it did not hurt (a lot).
Yesterday played basketball, today jogged 30':p..no real pain/ problems so far.
My concern is 1) that i have to change cotton pads every few hours...Will this ever end / improve; The drainage includes mostly pus and some bleeding.
What hapens over time; how does this change; 2) Also my understandning is that my fistula is mid-high transphicteric; Does anyone know whether it becomes any lower with the use of seton.
3) Lastly I believe I had a draining seton (although it looks pretty tight!) and the knot is high...

The CRS told me that he will see me again in 8 weeks in order to proceed with FiLac surgery (non-invasive, 70% success) check it out on google if you haven't heard it it used extensively in Germany and I believe it is applicable for Krohn's patients as well. No sphincter effect, not really bloody etc.
I am new in the forum any thoughts / comments would be appreciated.
Best, Dimitri.
Hello jogged played basketball!! You're doing so well. I got my seton on 6th July and can hardly walk and feel constantly fatigued. I'm a bit older at 57! You can move the seton about if it gets too uncomfortable but I have to work up to it as it's so painful. My own surgeon isn't thinking of operating until xmas if at all. It just depends on how well I heal. So you may have to put up with the dressings for a while. I looked into this procedure you mentioned and will ask at my NHS hospital if they do it.
Hope you keep making progress.
Hi Fiona, thanks. So far so good in terms of the seton.
To be honest I hardly notice the seton in my activities & sports. It's just mostly psychological (but we should never let it get us down!!!), plus the draining which is certainly decreasing.
Now I am on the 12th day and I believe the draining it is the same or slightly less than it used to be prior to wearing the seton...
You are right, it will take (lots of:)) time...So patience and perseverence is the name of the game...In terms of your seton I believe sitz baths and walking (if you cannot handle too much maybe 15' at home should be ok) should really help. Walking means more draining=less pain. In terms of the fatique, to be honest, I found that prior to wearing the seton, the cycle of open/close made me feel more tired. That is a hunch though ...

I am supposed to meet my surgeon by the end of September to reassess the situation. That's all we can do Fiona! All the best, Dimitri.
You are right and I work around at home and try and get out for a wee walk. Some days are better than others. The biggest issue is the psychological impact. I am a single woman and hoped that I might meet someone again - thinking that might never be a possibility is quite depressing. I'm keeping busy writing, researching, learning a language and I went out to see a band the other night which was great. To get there I had to spend most of the day resting but it was good to be out and chatting and listening to some music. I'm not at my work and don't know how I'd manage sitting all day in a very pressurised environment. I don't think that would be possible without access to a place to rest or wash or privacy going to the toilet.
I've never had the cycle of open close apart from fissures that I suffered for a long time which ended with surgery 2 years ago but my seton has a biggish cut and I think this is where the pain and discomfort largely comes from.
I'm finally getting to speak to someone next week about what happened so will let you know.
I've been really watching my diet but I'm going to cut sugar down because there is evidence to suggest that these issues are from fungal mycobacterium in our guts. They love sugar so I will starve them to kill them lol There are clinical trials taking place currently. I'm researching about this and will speak to a dietitian before changing. I'm searching for causes because I don't want to end up having this in a heal repeat cycle. I was told at the hospital that's often the case. Anyway Dimitri you're very cheery and positive and I'm trying to keep busy and do the same. Will exercise more too! I'm so annoyed because I just signed a contract for a gym with a beautiful pool which I can't use!
One other thing Fiona since you are based in the UK. In the UK I don't believe they have Filac. But they do have VAAFT which is very similar. I think you should enquire into that in regards to the NHS because I've read that they do that. It's also sphincter preserving.
Thank you so much - I'll ask about it. My previous 'bum' consultant was very good and tried all sorts nitroglycerin!, Botox, glue and finally surgery. They seem to be very interested in new techniques so fingers crossed!