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fistula treatment - setons + remicade - LOTS of ????s

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Posted 10/4/2007 7:04 PM (GMT -8)

I recently developed what my doctor is calling a complex fistula.  A month or so ago I had a large abcess in my groin and it lasted about 2 weeks before it came to a head and I lanced it the day before my doctor's appt because the pain was unbearable.  Now after a torturously long MRI a few weeks ago they've discovered these lovely branches that are making 'communications' as they call them with my rectum.  After 12+ years of battling CD this is my first encounter with fistulas - and I'm not liking it. mad   I will add that I'm essentially not having any pain from this fistula at this point.  An occassional slight ache around my rectum and I mean very slight discomfort.

The plan my doctor has for treatment is to have setons placed in the tracts and have them come full circle.  I've been told I will most likely have at least two if not 3 or more.  The third tract apparently doesn't connect with the rectum and there is a potential vaginal fistula/fissure - they're not sure from the images and I'm seeing a gyn the same day as my pre-op.  Once I have the 'surgery' I am to start Remicade.  I've been told by my doctor that this is a fairly effective means of treatment for fistulas.

I'm looking to find out what it's like living with a seton in place....  I have a pre-op appoint in a week or so and want to be prepared with a list of questions.

1.  I've been told this is an out-patient procedure/surgery - either a spinal, epidural, or general.  I don't like the spinal or epi options and would probably select the general, but also heard about versed (sp?) being an option - I do NOT want to feel or remember this.  Any thoughts?

2.  What is the recovery time?... my surgeon implied a quick recovery and back to work.  I'm planning to be off for at least 4 days (Th (surgery day), Fri and the weekend).  However I spoke with someone the other day and she said it took nearly 2 weeks to feel back to 'normal' and apparently 4 days before she could sit again.

3.  Can you feel it coming out your anus?  Does it hurt?  Does it get better with time to where you don't notice it anymore?

4.  How long did you have them in place?

5.  Were they effective in healing the fistula?

6.  Was Remicade used in addition to the seton?

7.  Did they reoccur after the seton was removed?  How long after removal did the fistula's come back?  I'm concerned about recurrance because I don't want to feel like I put myself through this for nothing.

8.  Has anyone gotten pregnant and had a vaginal delivery after having fistulas?  I have two babies (1yrs and 3yrs) and would like to have a third if possible.

9.  Has anyone had this done and when it didn't work ended up with an ostomy?  I don't have a colon and my rectum has caused me troubles in the not so distant past, so I'm seriously considering this option, but would like to postpone it as long as possible, at least until I'm done with babies.  I know you can have babies with an ostomy, but with the recovery time I think I would choose to be done having babies.

I know this is a long post.  I appreciate all those that read it through to this point :)  Any thoughts would be appreciated.  Even more questions to ask the doc would be appreciated.

Thank you!

Posted 10/4/2007 7:52 PM (GMT -8)
Wish I could answer your guestions other than say best of luck and hope you find relief soon.
Posted 10/4/2007 10:48 PM (GMT -8)
I'm going through something similar right now. I developed my first fistula about 16 months ago right after my daughter was born which they first thought was just an abcess. When it was discovered that it was a Fistula I was sent to a surgeon who said he would place a Seton. A week before my surgury I had a second fistula pop up which I was told is quite common. I ended up having 3 Setons (I had another one that I apparently couldn't see) placed over 2 months ago now and I am still having problems with them. The plan was to start Remicade after they were placed but I have had so many infections they have put it off and I have recently started my 3rd round of Cipro and Flagyl. Now I am waiting for my 3 follow up appointment because I have developed a 4th fistula that will more than likely require a 4th Seton. Personally I would have rather lived with the fistula.

In answer to your questions:

1. I had the general, I didnt want to feel or remember anything. I went in at noon and was at home in my own bed by 5pm that night.
2.My Dr. implied a quick recovery as well and I ended up being off work for 2 weeks. Honestly I could have stayed off longer but I was out of sick time (I'm the type to tuff things out and not complain but with all my infections these things really hurt)
3. Aside from the infection I can't feel the actual strings but sometimes when I bend a certain way and they pull or when you are wiping (something I couldn't do for a long time, baths after every bm) and you catch them, it hurts.
4.I still have mine but I was told on average people have them around 3-6 months
5. Totally not effective, in my case things have only gotten worse.

As for the rest of your questions, I haven't gotten that far in treatment but I'll let you know. I hate to sound so negative about this but I wanted to let you know the "other" side.

I hope I haven't scared you off and I am sure in the long run these stupid things are going to help. Right now I'm just bitter about them. If you want to ask me anything else about them fire away! =)

Good Luck
Posted 10/5/2007 4:25 AM (GMT -8)

Hey sorry you had to join those of us with fistulas.  I know what you are saying about the first one being a sort of stunning experience.  I had one, but it was much simpler than yours.  I couldn't fathom 12 years and then a new symptom shows up.  I can't answer all of your questions---and your situation is different--but I hope this helps.

1.  I've been told this is an out-patient procedure/surgery - either a spinal, epidural, or general.  I don't like the spinal or epi options and would probably select the general, but also heard about versed (sp?) being an option - I do NOT want to feel or remember this.  Any thoughts? I had general becuase I had a previous spinal issue due to back surgery.I remember nothing and it was over very fast.  However, I stayed there later than I would have with local sedation to "recover" from being out of it.

2.  What is the recovery time?... my surgeon implied a quick recovery and back to work.  I'm planning to be off for at least 4 days (Th (surgery day), Fri and the weekend).  However I spoke with someone the other day and she said it took nearly 2 weeks to feel back to 'normal' and apparently 4 days before she could sit again.  I sat again almost right away, but I had one seton and "the best place you can have a fistula" per my nurse.  I had the placement on Th and was working Monday.  I did bring a cushy pillowbecuase I have a desk job.  I just made sure to get up often--which is also good for your vision and back.

3.  Can you feel it coming out your anus?  Does it hurt?  Does it get better with time to where you don't notice it anymore?  I pretty much never noticed the seton except brushing it occassionally when I wiped.  I didn't have any pain that I didn't have with just the fistula.  I never even noticed when it worked its way out and was gone.

4.  How long did you have them in place?  Mine was in a year.  I had limited muscle involvement, but my surgeon still adjusted the loop size in tiny increments so I never had to consider muscle damage.  I went to the doc every month or 6 weeks.

5.  Were they effective in healing the fistula?  I thought this was the greatest thing for me.  I had no meds involved with the fistula and it has not come back ----yet---may have a new one now

6.  Was Remicade used in addition to the seton?  I did not use Remicade, but that was my choice for other reasons.  I have heard others with wonderful responses to Rem....check any other Remicade posts for info

7.  Did they reoccur after the seton was removed?  How long after removal did the fistula's come back?  I'm concerned about recurrance because I don't want to feel like I put myself through this for nothing.  Per my doc, once you have a fistula, you will keep getting them.  The Rem is supposed to help prevent them though.

8.  Has anyone gotten pregnant and had a vaginal delivery after having fistulas?  I have two babies (1yrs and 3yrs) and would like to have a third if possible.  No Kids for me so I can't help you here

9.  Has anyone had this done and when it didn't work ended up with an ostomy?  I don't have a colon and my rectum has caused me troubles in the not so distant past, so I'm seriously considering this option, but would like to postpone it as long as possible, at least until I'm done with babies.  I know you can have babies with an ostomy, but with the recovery time I think I would choose to be done having babies.No Kids for me so I can't help you here

Posted 10/5/2007 8:17 PM (GMT -8)

Thank you all for the replies and the honesty!!  I'm just not convinced of this procedure just yet.  I have a desk job as well and am concerned about being able to return to work in a timely manner.  I know that a two week recovery is much less than other recovery times, but I'm still considering the ostomy and don't want to waste time with the setons if they aren't going to work.

I have a nice list of questions for my pre-op appointment and plan on calling my GI doc if I don't get good solid answers from the pre-op. 

Thanks again for the response!

Posted 10/6/2007 9:58 AM (GMT -8)

Here is my fistula story.....I got my first one in Nov. of 2004.  I had a HUGE abscess...the size of my surgeon's fist!  I started remicade in Dec., and my fistula was closed by Feb.  I am still on remicade to this day.....and I have continued to develop abscesses every few months until about a year ago when my surgeon was finally able to locate the fistula and put a seton in it.....Now to answer your ?s

1.  Yes, it is outpatient.  I have used general in the past, but the last couple of times, I chose the versed combo.  I don't like people messing with my spinal area, and I didn't want to be awake....so no spinals or epidurals for me......With the general, I prefer not to use it.  I don't like waking up from it, and the way it makes me feel for the next 24 hours.

2.  My seton was placed just over a year ago.  I was back to exercising within the week, and back to work in a few days.   I had no pain from mine.  I only use my pain meds that night of surgery, and one the next morning, and that is it.    So I am definitely back to normal in a week.

3.  I cannot feel it...I have never felt it....it has never hurt.

4.  Mine is still there...it was a year in Sept.

5.  Yes, it is healing it slowly....but I am still on remicade.  One thing that the seton does an excellent job at is preventing abscesses!!!!!

6.  I was all ready on remicade.

7.  I still have mine....and I am in no hurry to get rid of it.....it has kept me abscess free, and it doesn't bother me, so why get rid of it?!

8.  No, I haven't been pregnant while having one.  I have 2 girls, 5 and 7, both born precrohns.  We always wanted 3 children, but then crohns....  We have chosen not to have anymore children because of the chance of passing it on. 

9.  NA

Posted 10/6/2007 11:26 AM (GMT -8)
Brampton,
I'm so sorry you're having to deal with all of this. I went through it, too, and it was not a pleasant experience for me. I started out with a rectovaginal fistula and took Remicade for 3 years. It did not take care of my problem, and I ended up with an extremely painful abscess on my right butt cheek.

That led to surgery to open up the abscess, which left me with an open wound and a seton drain. My GI and surgeon recommended a temporary ileostomy to bypass the colon and rectum to keep the area clean. I agreed to that surgery, which was not a big deal, but I was still in pain from the seton drain.

I also have a desk job, and it was so painful to sit with the seton drain in. I would sit on a donut ring and have take pain medication just to get through the day. It was not pleasant. After 8 months of being bypassed, my colon still flared up, and I bled for a week.

I was so tired of the pain and the disease that I called my surgeon and told her that I was ready to have my colon and rectum removed. I loved the freedom that the ileostomy had given me, and I didn't mind if it were permanent. That was a year ago, and I have been disease-free, pain-free, and medicine-free ever since.

I have a scar on my butt to remind me of those days with Crohn's, fistulas, abscesses, setons, surgeries, and adverse reactions to medications, and I don't miss those days. I wish you all the best in your decision. If you have any questions about life with an ostomy, there is an Ostomy section here at Healing Well with lots of good information for people considering surgery.

Take care,
Cecilia
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