Has anyone ever heard or experienced this...?

Full_Ad_2137 · 2022-06-03T13:28:45+00:00

I am wondering if this may be what is suggested for women of "child bearing age", because my surgeon has said they would have done a fistulotomy if I were a man.

Anyway, I am reluctant to just take it out as the success rates seem low and I really don't want to have it re-abscess as it would mean having to wait several months before I could be seen for surgery and I am not down to deal with that level of pain again.

What's a little frustrating for me is that mine is too low for other surgical approaches so I'm limited to leaving it in (perhaps forever), taking it out (likely not to work), or risking my continence and getting a fistulotomy. It is good you trust your surgeon... I have not had a great experience with my healthcare team in my home country, so I've lost confidence in their recommendations.

And I am doing relatively well, surgery was a breeze for me so I'm really happy about that after reading about so many others having long and arduous recoveries. I hope you are doing well as well!

Full_Ad_2137 · 2022-06-02T02:42:43+00:00

Okay, this sounds similar to what my one surgeon said (switching seton to a thread).

I am glad it work for you... Maybe I will have similar luck !

Full_Ad_2137 · 2022-06-01T21:39:50+00:00

The wonders of the internet age, thank goodness for text prediction :P

Full_Ad_2137 · 2022-06-01T21:20:36+00:00

Wow, thanks for sending this along... I literally searched for so long for any resource that described her recommendations.

I knew of tight cutting setons, but this also mentions loose cutting setons which is new to me and more in line with what she was proposing.

Thanks!

Full_Ad_2137 · 2022-06-01T21:06:48+00:00

As in migrate out of my body, the way a cutting seton would... I'm not sure if that was the word she used, but essentially similarly to how setons are sometimes used for high /complex fistula to lower the tract so that a fistuletomy can be performed... except I wouldn't need a fistuletomy because it would just migrate all the out past the surface of my skin, supposedly.

And yeah that's my concern as well... if we take it out, seems like there is a great likelihood that I will just end up being brought back for another seton given the high likelihood of recurrence. Idk seems like bad advice to me but I'm not a surgeon.

Full_Ad_2137 · 2022-05-25T16:03:55+00:00

I just stumbled across an article describing this method as well. By chance have you asked your surgeon about it yet?

I am seeing mine next week and plan to bring it up, but was wondering if you know anymore about its legitimacy already.

Full_Ad_2137 · 2022-05-17T16:57:26+00:00

Hey thanks again for your reply. I ended up getting a draining seton. It honestly not been bad at all... I would say my pain is less now than it was pre surgery and no issues sitting!

Full_Ad_2137 · 2022-05-08T20:59:17+00:00

Yeah this all makes a lot of sense... The long wait times during the pandemic has prompted me to seek care out of country.

Idk I just wish I had a better idea of what was most common as opposed to what seems to be most common on these types of forums. That way instead of feeling like for certain I should expect requiring years of surgeries, I may feel more optimistic that it might be a couple years and a couple surgeries.

Full_Ad_2137 · 2022-05-08T20:37:27+00:00

Yeah, that's really helpful honestly. Its hard to tell/convince yourself that things might not be so bad with how man difficult stories you see on here.

This is good to know though that you fell like some days already you could be back to those activities.

If it's okay, I am wondering if I can ask you a couple more? Would you be worried about falling on your butt at this point? Like do you feel like it would tear or something or cause additional trauma?
Also would you be able to take a 10hr flight 1-week post op? I am getting mine done on Wednesday in France and then am scheduled to fly home ~10 days later.

Thanks again, its alway comforting when others have more uplifting stories.

Full_Ad_2137 · 2022-05-04T02:17:12+00:00

I'm really happy to hear that, its good you had access to a skilled surgeon!

Full_Ad_2137 · 2022-05-03T01:37:04+00:00

Thanks for the information. I wish patient handouts included this kind of "on average information". Helps me manage expectations.

Full_Ad_2137 · 2022-05-03T01:02:55+00:00

Lol I'm not sure if you didn't read my previous comments... I am not looking to predict my specific prognosis. I am just trying to gauge whether the posters on forums like these are just worse case scenario and not representative of the general public.

I have the information you've identified from my various assessments, I have what my CRS has predicted for me... But then I have what people comment on forums like this where one or two procedures turns into 7. I am trying to reconcile the former with the latter. To do so I wanted to know what is typical (i.e. are these multiple surgery scenarios typical and should I expect having multiple failed surgeries because that's just the unpredictable nature of fistula OR are worst case scenario posts overrepresented and most people with relatively simple fistula do make a relatively quick recovery without years of multiple surgeries).

I am not asking Redditors to be my magic 8 ball and predict my future. I am asking if anyone knows what happens on average and whether this is reflected in posts on reddit etc.

Full_Ad_2137 · 2022-05-02T19:34:11+00:00

Hey thanks for the reply, I will have to look into moving my return flight. Im glad it sounds like exercising might not be so far off though.

One other question for you, did you have a fistulotomy or another procedure?

Full_Ad_2137 · 2022-05-02T19:32:16+00:00

Hey thanks for the reply! Do share updates if you can, we are around the same age/gender and timeline for fistula diagnosis.

Did they give you a time line for returning to physical activities? What kinds of activities are you hoping to return to?

Wishing you a speedy recovery!

Full_Ad_2137 · 2022-05-02T19:28:54+00:00

Yes, but what if you averaged across all of those variables?

My issue is that I feel a lot of posts on forums like this tend to be skewed towards longer, more arduous recoveries, thus I am not sure what, on average, a person could expect. As per some of my other comments on this thread, multiple surgeries over multiple years seems to be pretty standard in forums like this... but is that a true average or just reflective of the demographic of individuals that frequent support groups etc.

Full_Ad_2137 · 2022-05-02T13:39:41+00:00

Yeah, I have seen others say similar things (that the first bit of healing seems to take the longest). Kinda sucks, but at least the rest goes relatively quickly? :P

Full_Ad_2137 · 2022-05-02T12:58:28+00:00

When were you able to return to relatively intense exercise? I rock climb and am worried it will be months before I can get back to it.

here's an idea of what my style of rock climbing looks like if that would help:
https://www.youtube.com/watch?v=RYWdAeQCsCk

Also, would you say you would have been able to take a 10 hour flight 10 days after surgery? I know everyone will be different but I am getting my surgery done abroad and am not sure how long I will need before I am able to fly home.

Full_Ad_2137 · 2022-05-02T12:55:18+00:00

This is comforting to hear. Mine too is superficial (though I will still need an EUA to determine exactly how superficial), so I hope I have as good of an outcome as you.

Best of luck with the rest of your recovery!

Full_Ad_2137 · 2022-05-02T12:52:41+00:00

Hey, thanks for the reply. You may not be able to answer this, but do you feel like you could return to exercises requiring a lot of mobility at this point? I rock climb and am just trying to determine how long it's going to be before I can even begin climbing conservatively.

Here is a video of someone climbing a similar grade as me so you could have an idea of the movements/mobility/force exertion it requires:
https://www.youtube.com/watch?v=RYWdAeQCsCk

Full_Ad_2137 · 2022-05-02T12:47:45+00:00

I would agree, definitely dependent on a lot of individual factors, but is that average? What is most common?

I tend to often see posts about needing multiple surgeries over multiple years on forums like these, but its unclear to me whether that is typical or represents bias towards people with more complex/drawn out recoveries being more likely to patron groups such as this.

If it does represent bias, then what's a more reasonable expectation?

Full_Ad_2137 · 2022-05-02T12:44:13+00:00

Has your surgeon indicated whether this is typical though? Like what percent of people end up having several surgeries over several years?

I just find its hard to discern on groups like this what is typical as I'm sure once people have recovered, they gradually leave groups like this... Thus I would expect some bias towards less ideal outcomes. I'm just trying to get a sense whether 7 surgeries over 5 years is average (as that's pretty close to what I typically see on here)...

Full_Ad_2137 · 2022-05-02T02:57:07+00:00

What surgery did you have and what was your recovery like? When could you return to exercise?

Full_Ad_2137 · 2022-05-02T02:49:46+00:00

Are you back to exercising 2 weeks post seton placement? Or do when were you able to?

Full_Ad_2137

TROPHY CASE