Help Please: Signs of fistula healing???

Hi all,

I posted last week asking about possibly having my seton removed. I did see my surgeon yesterday morning and he insisted that we remove it because I appear to be 100% healthy, other than the seton... which is really exciting Still, I was paranoid about removing it because of my history with abscesses. I've been on Humira weekly for 10 months and noticed my symptoms were completely gone by October/November 2012.

The seton was removed and he said it would continue to drain through the tract of scar tissue that formed from the seton. He said that I am at a place they want all of their patients to be, as the Humira is working very well. He said that it should heal everything right up. I still see the hole of where the seton was, of course, but the drainage has stopped?? It was draining yesterday all day until last night I noticed a decrease and now nothing. Is this something to celebrate or freak out about?? What could this mean?

If it helps, my seton was in for about 11 months so the tract is very well formed....

Any information is appreciated.

Thank you & wishing you all comfort & healing!

Congratulations! I am looking at seton removal next month and have had all those same talks with my surgeon that you no doubt have had.

Sudden stopping of drainage could be good or bad. Maybe you should take sitz baths a for a few days and just watch it. Maybe it healed up at the entrance and you are all set! I hope thats the case. Maybe it is backing up somewhere and getting ready to cause problems. That would suck but is also possible.

Unfortunately, I don't think you can do much but wait and see. My surgeon said when they pull my seton next month to watch the drainage and if it starts to slow down and the area gets uncomfortable or worse if the fever reappears to call him and have it looked at and likely put back in.

Good luck, I hope you are just healing and all is well.

Senora and Sailor - how does the doctor know if scar tissue has formed inside the fistula and it's "safe" to remove the seton? Do they somehow look in the tract, or is it based on the amount/type of drainage? Just curious on this ...

I'm also guessing the fistula tract will continue to drain until the tract closes completely - does a closing-of-the-tract mean it is finally completely filled with scar tissue? Prior to its complete closing, does the scar tissue that's there mean that the fistula will not ever be infected again?

So many questions! My seton's been in for 9 months, and my surgeon "guaranteed" it would not heal without a big operation (jpouch redo or removal). The other option given was to leave the seton in for 3-4 years (!) and then have it taken out and "see how it goes".

Anyhow: so glad to hear your setons are out/will be coming out. Hope it all works out great for you both!

Thank you Sailorluna! I'm thinking everything is going well... Feeling great and still no drainage. Taking my humira in an hour or so. Thanks for the reply. Good luck with your removal as well!!!

Napter- My surgeon said they usually leave a seton in for 3-6 months before removing it and that mine had been in plenty long... 11 months or so.. so the tract would be well-formed. Mine actually fell out and my gastro suggest I see a surgeon to see if it was time to remove it completely, which is what he did. We may have different fistula situations. I know that I have had a hard mass of scar tissue since probably the 3rd or 4th month post-seton surgery. From what I know, the scar tissue tract from the seton may stay open for awhile, but when/if fistula closes, the drainage will stop and abscesses can no longer re-form.... I know that the scar tissue doesn't prevent another infection from happening, but it does keep the tract open for it to drain while waiting for the fitula to heal. Does this make any sense to you? This stuff is so hard to describe!! Let me know if I can try & clarify anything for you! Best of luck.

Wishing you both health!

Senora, thanks for that explanation - it was so very helpful! Another question now: how did you know about the scar tissue that developed - could you feel it under your skin? My fistula is a little higher up inside me, so I don't know how I'd know about scar tissue ...

I can't tell you how thrilled I am your fistula is healing so nicely. Not often we get to hear success stories. Best of luck to you as well - I hope you keep us posted as to how this all goes!

Hi again,

Thank you so much... Still so far so good and I'm going on day 4 of no seton. I can feel it near where the seton would come out.. a hard lump. You may not be able to feel anything from what it is sounding like.

I realized I never answered your previous question about drainage.. I was still having drainage daily and the doctor wasn't concerned. He said as long as the tract was properly formed from the seton and more importantly, there were no signs of inflammation, they could remove it. I think having no inflammation is the most important part because if they remove it before things are calm, you are likely to abscess again. Also, they were comfortable taking it out because I take biologics (ie- Humira, Remicade, etc.) and have shown progress so far.

I will keep you posted on the healing process.. I'm hoping this is the end of this pain in the a** :ylol:

Thank you for your well wishes.

Keep in touch,

Senoraharvey, first off congrats on the healing process I am so excited for you!!! I have a few questions for you as I am new to learning about fistilas and abscesses. In the first post of this thread you said your symptoms were gone by oct/nov 2012; were you referring to symptoms of a fistula or abscess? If so what are they? The doctor told me I have a fistula and the only reason I know is bc of the drainage. I was curious if there were other symptoms. Also, were you always on prescribed the dose of humira once a week? I am just curious because I am on humira one shot every other week. I started in sept 2012 for a flare up and the doctor thought humira would help heal my fistula as well, however I still am having drainage ( less tho compared to when I started) but its still frustrating.
Thanks for the help! Glad you are on the road to good health!

I have had my abscess problem since Sept/12. I do have a few days where it seems as though it it gone and cleared up-no pain and no draining- but I have learned the hard way to NOT put the sitz bath away, as it can come back full force in a few hours! So I am not fooled anymore when it has stopped draining and there is no pain, the pain always comes back! So far! I am on my 7th month.

Hi again,

When I say my symptoms were gone, I mean in regard to my gut. I was having diarrhea 10-12x per day before Humira and my docs say that is what caused the fistula to form. I was on Humira every other week from September 2011-May 2012 and then they changed me to weekly and that made a HUGE difference for me. By August I felt like myself again.

In terms of the fistula, it was draining still... the seton was put in in April or May 2012 and it drained constantly... not much, but enough to be annoying. You know what I mean ... I'm HOPING that things are clearing up with the fistula, but I have continued using sitz bath at least 2x/day to be safe. Prior to upping the Humira dose I had the anal flap surgery and it failed. Within 2 months the tract had moved and I ended up with another abscess. It came from the same fistula though apparently.

Luckystar, do you have a seton?

I do not have a seton. I actually never heard of one until doing research on fistulas myself bc I was so annoyed with drainage and my doctor was not really doing anything about it. He told me to use toilet paper to absorb the drainage. I am in the process of moving in the next 3 months and I think he is avoiding actually treating the fistula and letting it be another GIs problem after I move. Although, every time I see him i repeatedly tell him how much of a stress this is to me. Let me state this tho, my bottom does not hurt at all.

Senoraharvey- thanks for sharing your story!

I'm sorry to hear your GI isn't being proactive with you. I had a similar experience and ended up changing hospitals. They would wait for things to get really bad, rather than doing all of the nececessary testing... I've had much better luck with my new hospital and GI.

In regard to my situation, I'm still abscess free, though it has only been 2 weeks... I am hopeful. I've had no drainage since the day they removed the seton. I'm hopeful, but cautious. I wish you health. It is definitely a good sign that your rear isn't hurting you!

Wishing you health & good luck!

senoraharvey said:

I'm sorry to hear your GI isn't being proactive with you. I had a similar experience and ended up changing hospitals. They would wait for things to get really bad, rather than doing all of the nececessary testing... I've had much better luck with my new hospital and GI.

In regard to my situation, I'm still abscess free, though it has only been 2 weeks... I am hopeful. I've had no drainage since the day they removed the seton. I'm hopeful, but cautious. I wish you health. It is definitely a good sign that your rear isn't hurting you!

Wishing you health & good luck!

Click to expand...

Glad to hear you are abscess free so far, that is awesome!

My son who will turn 15 next week just had his 2nd perianal abscess drained and seton put in yesterday. He was diagnosed with Crohn's 16 months ago and at the time a very mild case. He had no symptoms of Crohn's but he stopped growing and was diagnosed with disease of the ileum. He developed an abscess and was being non-compliant with his meds about 2 months ago. It came back and a fistula developed. They added entocort and increased his pentasa and did the seton.

He is very angry and abusive to me and the rest of our family and is not dealing well 24 hrs post op although it is looking much better than 24 hours ago. He plays lacrosse and hockey and I am wondering if he will still be able to play with the seton in place. We see the GI in 8 days. I think they also want me to consider stronger meds. We may but am concerned with cancer risk on teenage boys. The fistula is simple and superficial. It doesn't go through the sphincter at all.

Do you have any pointers for me? Will his postop pain go down quickly? Any tips so he can get back to his sports?

I think I would rather he have D than this!

Thanks.

BoyMama2000,

My heart breaks for you because I understand how you must be feeling and certainly know how your son feels. Your son and I have a lot in common. I was diagnosed when I was fifteen and being diagnosed at such a young age is very difficult. I am a very positive person and I tried to look at every bit of the situation in a positive way and decided I would be the person to educate others about this terrible disease. I had many bad days of course too when I would cry by myself or with my mom... Don't get me wrong. I do know that it is extremely difficult to be positive in a bad situation and it will take your son time to cope. I am a high school teacher and at 14, no kid feels normal, nevermind having to deal with this pain.

I was on Pentasa and Entocort originally for my ileum inflammation, but the damage from too much diarrhea had already been done and caused a fistula. My doctors suspect that this and the Crohn's are why I developed the fistula. I will tell you that I was put on biologics (Humira in my case) too late in my flare up. My doctors were too conservative with my treatment and I blame some of the complications of this flare up on that. I actually posted yesterday in the "My Story" http://www.crohnsforum.com/showthread.php?t=49535 if you want to know exactly what I have been through. Needless to say, the longer I was on the Humira, the better I felt, so they tried a flap surgery to repair the fistula, which ended up being unsuccessful. I abscessed again, another seton, and they upped my Humira. I then changed hospitals and go to Mass General in Boston. I don't know where you live, but if you're within driving distance of Boston, I highly recommend them. Basically in my opinion, if they suggest biologics, he should take them because it is the most effective way to treat a fistula. Many members on here have had a lot of success with it. I was frightened about the side effects (cancer, etc.), but the likelihood is so minimal... and getting your quality of life back is much more important. I was also frightened that I would "run out" of meds to try so I was hesitant to start. My doctors at Mass General laughed and said that they are always experimenting with new drugs and not to worry. There will be more options coming. At this point, I'm just happy to feel well. It is definitely good news that his fistula doesn't go through the sphincter. Mine didn't either and the Humira has closed mine so I'm now seton free for 3 weeks now.

In regard to your son's pain, I took baths as frequently as I could. I'm sure they recommended that, but if not, it will accelerate the healing process. Within a week, I was feeling SO much better and was back to the gym I believe in 2 weeks or so.. maybe less. It depends on his condition before the seton placement honestly. One time I went in and was feeling okay... I healed much faster. Another time I was in severe pain from the abscess, so when the seton went in, I already had trauma to the area and I think it took 3 weeks for the swelling to completely go down... I teach 3-4 INTENSIVE Zumba classes a week in addition to being a classroom teacher, so physical activity will be fine for him I'm pretty sure. I never felt restrained with the seton and eventually I forgot it was there. Occasionally it would get sore so I would take a sitz bath, a regular bath, or use a heating pad as much as I could. He should be back to hockey and lacrosse soon enough, but make sure that he rests and feels well before starting again. Rushing back will do nothing, but make him more miserable.

In terms of pointers for you, he is angry I'm sure and is taking it out on the family. He may benefit from coming on here and reading through some of the stories. I know he is young, but I was too... and when I started reading I realized that there were others worse off than me and that there was hope. Also, he would be able to talk to people with the same problems. I am more than willing to email with him if he is comfortable.. I can answer many of his questions because I have been there. My email is senoraharvey@gmail.com ... I know this must be very difficult for you and I wish I knew what to tell you. He needs to come to terms with having this because the anger will only make him feel worse. Stress for me always triggers a flare... I have had 3 flare ups 1) parental divorce 2) going to college and 3) planning my wedding ... So I try to manage my stress the best I can. I also did acupuncture for awhile, which helped me calm down. I think talking to others with the disease will be most helpful to him. I also joined the Crohn's and Colitis Foundation of America and did some walks with them. I ended up meeting a lot of young people and made friendships. I'm sure he is not wanting to tell his friends at school so he needs an outlet and he may find talking to his family embarrassing. I know it is hard, but once he physically feels better, it should be easier for him to cope, which is why I suggest the meds.

I hope that this is helpful. Please feel free to ask me any other questions you have.

Wishing you and your family health.

Vanessa

Vanessa, I never thought of using a heating pad. That's a good tip! I will have to try that

He re-abscessed after 3rd surgery. Thankfully it started to drain (in a major way) last night. We go back to the surgeon today and make seek a 2nd opinion from an adult colorectal surgeon. I just hope he is able to finish his classes with only 4 weeks left of school. He I an excellent student and I hate that this may set him back and change his grades as a freshman. I am not sure if he can handle the pain but if he can drain at times, I wonder if we can put off another surgery until school is out.

Anyone have bad odors with longstanding Setons ?

Boymomma2000: do his teacher know he has crohns? If he needs surgery can they give him an incomplete ( like putting his grades on hold) until he is well enough to finish the coursework?

They do know he has Crohns and he is on a 504 plan. Some teachers have been great and others less responsive but we are hoping to carve out a plan with each to determine the critical work he needs and when he can take catch up tests and get back up to speed. Incompletes may be an option if needed. I guess one of the high school English teachers has Crohn's so is LA teacher has been awesome! His geography teacher has a close friend with Crohns and has been great too. It was good for Sean to learn this so he doesn't feel so alone. His regular guidance counselor is at a conference this week. If we don't have a good plan by next week, I plan to find out more specifically about his rights and what we need to do.

Thanks for the info about the incompletes. I just don't know how he could make up the work before the start of his sophomore year without summer school so he can keep up with his course load. Does anyone know more about his rights with the 504 plan?

Thanks,
Nancy

Coming in a little late here.

Senoraharvey sounds like your on the path to healing. Congratulations!

I had basically the same circumstances as you. The Humira did it for me.

Best of Luck to all!

My son did re-abscess again although the surgeon said his fistula looks healed. He is just healing too fast on the outside of the abscess and not allowing that to heal from the inside out. They put in a penrose drain on Friday and he is in very little pain...much less than all of the other procedures. I noticed his stitches fell out last night so we had to go back to the ER and he was stitched again. We don't want this drain to fall out since something is finally working!

Poor kid needed a local lidocaine injection but did okay after the initial poke (and some nasal fentanyl and verced). He is still sleeping. I hope he feels just as well this morning. He is back at school and catching up. 3 more weeks till summer for him. Hope he makes it through and starts the summer abscess free!

Then we meet with GI to see if he should go on some stronger meds. They said he is a gray area because he has only small bowel Crohns and the fistula healed. Need to balance meds versus risking this again!

Hey again,

I'm sorry to hear he abscessed again! UGH. Please tell him to stay positive and that summer vaca is right around the corner. I know I told you this before, but I was too conservative with my meds and it changed from just small bowel Crohns to including fistulas/abscesses because I didn't take the more aggressive route initially. Everyone is different and I hope if you decide against the stronger drugs, I hope your son can keep his Crohns controlled. Send him my best wishes.. Hoping he is feeling better every day!!!

On a different note for all readers, my seton has been out now for almost 2 months and still no re-abscessing, no drainage, nada. Life is good for me right now and I'm wishing you all the same. When you are healthy, nothing else seems to matter too much...

Wishing you all health & many good days

When we see his GI doctor, I plan to see if the Entocort has brought his Crohn's under control. Then we will weight the pros and cons of treatment next. The cancer risk is much worse for teenage and young men than any other group for a lot of the meds. If he was a girl, I would be much less hesitant.

We certainly can't keep going through this but without even microscopic evidence of Crohn's in the sigmoid or rectum, perhaps it can be controlled with what he is taking now. Before, we wasn't taking his meds consistently and I know that hurt.

Time will tell, for now I just hope these stitches stay in and his area heals!!!

Senoraharvey,

I am not sure if you still visit this site but I would love to hear if you are still doing well and are fistula free. I hope that you are! I have battled UC for years but have been in remission for some time. Unfortunately, my biggest battle has been an ongoing fistula for the past 2 plus years (seton placement then a failed LIFT surgery). Humira has been an option although I have tried to avoid the immune suppressant drugs for fear that things will reoccur once I stop taking them. Are you still on Humira? If you stopped taking it did you happen to experience a reoccurrence of the fistula?

Thanks for any response that you have time to provide!