Seton but still abscessing?

[justwannagetbettersoon]

Hello all. I just wanted to start off by saying that I've been browsing the forums now for almost 2 years since I first developed an anal abscess and eventually the anal fistula.

I actually haven't been diagnosed with crohn's but everyone here seems to be very knowledgeable on the topic of anal fistulas. That's why i decided to post here.

Anyway, I had a seton put in about 6 months ago because my colorectal surgeon said I had a complex fistula and he said he didn't want to risk cutting too much muscle as it might make me incontinent. He then said that after a few months he would do another surgery to close the internal opening of the fistula tract.

I'm not really sure what the experience of the seton is to be like. I was under the impression that I would no longer abscess and that I would just constantly drain without clogging any longer. However, this wasn't really the case. There was much more drainage (which was expected), but I am still clogging up. Is this normal??

Also, there was a point during the 5th month in which the drainage stopped for 5 days, but now I'm draining a lot again.

My colorectal surgeon said that I shouldn't be draining this much and that "he doesn't have a good explanation" to why I am draining this much. I'm just really confused. He said he was going to do the surgery anyway because when he looked with the anoscopy, the fistula scarred down well or something...

I'm scheduled for surgery on the 26th but I'm a little nervous and scared that it's going to fail because I'm still draining so much.

Has anyone had a surgery done even though they're still draining??? I mean isn't that the purpose of the seton, to drain it all out so you can close it up to heal?

 

[lollyadverb]

Sometimes setons don't do the trick. I had two anal fistulas that kept getting infected so they put in setons. At first things got better, then they became more inflamed and painful.

For me, the next step was a temporary colostomy. This might sound drastic, but MAN did it make my life easier! No more painful diarrhea. It took a few months for the swelling to go down, then they did the repair surgery.

Are your fistulas painful? If they are still draining it sounds as if they might be infected?

 

[Sailorluna]

I have 2 setons. One for 3 years now. They always drain. Some days more and some days less. Clogging still happens. For a while I would clog up and it would start making a new drain. Now if I get tender or the draining seems to really slow down I make sure to spend some time in a sitz bath to try and get it started again.

My surgeon will not do any kind of repair surgery down there due to the drainage and activity. I would be very nervous about having that done until the activity/drainage subsides.

With my first seton it needed to be re-drained several times before he opened it wide enough that he joined the tracks together and stopped the cycle for almost a year.

If you are nervous about the repair surgery you should consider a second opinion from another colo-rectal surgeon. I have heard really scary stories about people doing it to soon and the repair failing.

Good luck with whatever path you take.

 

[justwannagetbettersoon]

Sometimes setons don't do the trick. I had two anal fistulas that kept getting infected so they put in setons. At first things got better, then they became more inflamed and painful.

For me, the next step was a temporary colostomy. This might sound drastic, but MAN did it make my life easier! No more painful diarrhea. It took a few months for the swelling to go down, then they did the repair surgery.

Are your fistulas painful? If they are still draining it sounds as if they might be infected?

It kind of cycles for me. But the majority of the time (as in 80% of the duration of having the seton in) its been mild-moderately inflamed/painful. They are still draining a lot. The drainage also has a foul smell. I'm pretty sure it's infected.

 

[justwannagetbettersoon]

I have 2 setons. One for 3 years now. They always drain. Some days more and some days less. Clogging still happens. For a while I would clog up and it would start making a new drain. Now if I get tender or the draining seems to really slow down I make sure to spend some time in a sitz bath to try and get it started again.

My surgeon will not do any kind of repair surgery down there due to the drainage and activity. I would be very nervous about having that done until the activity/drainage subsides.

With my first seton it needed to be re-drained several times before he opened it wide enough that he joined the tracks together and stopped the cycle for almost a year.

If you are nervous about the repair surgery you should consider a second opinion from another colo-rectal surgeon. I have heard really scary stories about people doing it to soon and the repair failing.

Good luck with whatever path you take.

I was told my Colorectal Surgeon was really experienced by several doctors I've seen. BUT every time I ask him questions he always seems confused about my case like it's the first time he's seen it which I find pretty weird.

He even told me that in his experience, 90% of the time his surgeries are successful when he sees the scarring of the fistula like how mine was the last time he did the anoscopy which was about a month ago. I don't know if it was just perfect timing with when my drainage stopped randomly for that one week. But surely enough, a week later, I started draining a lot like I usually do. But he was so confident about everything.

What's the worst that could happen, if I went through with the surgery too early?

 

[Sailorluna]

What is he doing?Cutting it all the way open and removing the seton or doing a flap or plug surgery?

 

[Sailorluna]

I think worst case if cutting it completely open while there is active crohns is that it may not heal right - it gets worse of course if he is cutting your anal muscles but he is not.. right?

For the plug and flap surgeries where they try to seal the internal opening of the fistula the worst case I have heard of is it failing and tearing the internal fistula opening larger which can allow more and larger fecal matter into the fistula.

 

[justwannagetbettersoon]

All he said is that he's going to close the internal opening. In his own words he said that he was going to "put a big stitch in there."

Also, I've never been diagnosed with Crohn's. At first I thought I may have it because I kept having diarrhea/intense stomach cramps on a daily basis, but I figured out it was because I am lactose intolerant. Ever since I went on a dairy free diet, my bowel movements have been normal, and no more stomach cramps.

Does that sound like Crohn's at all?

The two possible signs were the diarrhea/cramping and anal fistula, but the diarrhea/cramping stopped after I went on a dairy-free diet.

 

[Sailorluna]

well, if you don't have Crohns the success rate is far better.

 

[Elizajp]

I got two setons for an abscess in April of last year. They kept getting all blocked up and not draining properly so they had to put in two new setons. So now I have four. They don't get backed up too badly but they basically always hurt a little bit and if I have a day where I go to the bathroom more than normal or something they back up and I have to rest and do baths until they drain. I've had them checked so many times thinking there's got to be an answer but I think this is sometimes just the nature of these things. Some people have setons and they don't even notice them and some people are in a lot of pain a lot of the time hope you can get it all worked out and healed soon!

 

[Danu]

I agree with the sitz bath comment and I add Epsom salt. Helps drainage when clogged. I'm fortunate that mostly mine drains really well. The only times I have issues is when the knot makes it's way into the fistula. Pain. In the ass. Seriously. Hugs to you, friend. As if life isn't challenging enough.

 

[AFS]

I was told my Colorectal Surgeon was really experienced by several doctors I've seen. BUT every time I ask him questions he always seems confused about my case like it's the first time he's seen it which I find pretty weird.

He even told me that in his experience, 90% of the time his surgeries are successful when he sees the scarring of the fistula like how mine was the last time he did the anoscopy which was about a month ago. I don't know if it was just perfect timing with when my drainage stopped randomly for that one week. But surely enough, a week later, I started draining a lot like I usually do. But he was so confident about everything.

What's the worst that could happen, if I went through with the surgery too early?

Hello - How did your fistula repair surgery, the closing of internal opening, go? Please update.