Since early 2013, I've had a total of 4 setons placed for a perianal fistula. It's a pretty simple fistula... Nothing horrible like the Google images that come up when you look online at setons and fistulas. 

 

Some of them broke, some were removed on purpose when I started anti-inflammatory meds (steroids and Humira).  

 

I know we all have our limits on what we will consider as treatment, but there are studies showing biologics closing IBD fistulas. Also, the cancer risk with biologics is much lower than previously thought.  A large population that uses them are the arthritis population, and they *already* have a higher than average risk for lymphomas that may have influenced the statistics. My daughter has inherited indeterminate colitis (likely Crohn's), and has IBD related arthritis (had the arthritis symptoms first, since age 5).  They know kids who get in remission fast do better in their lifetime, and Humira put her in remission quickly and has kept her there. It's been a miracle for her, on both fronts. Watching your kid cry in pain when she walks is heartbreaking.). Her docs are at a large children's hospital (top 5 in the country), and the top down approach is how they work with kids: get them in remission, fast.  

 

I'm also on Humira to try to control my new IBD symptoms and fistula. I actually feel a lot better on it, and the on and off fevers I was getting, along with horrible overall malaise/sick feelings I was getting is SO much better.  I can't say it's been as perfect for me as for the kid, but there's definite improvements. 

 

However, youve likely heard all of this, and I'm not trying to sway you on your choices,  just offer what is working here. 

 

The seton itself isn't awful, honestly. It is helpful, really, and this far past the abscess, after having one seton in for 17 months, the tract is mature. I have a love/hate relationship with mine.  My newest one was put in at the end of February, and things are pretty chill at the moment.  Only the outside skin area is the problem. If that'd stay open, I'd have no need for the seton, as the tract is scarred and open.  Right now, I have no pain at all there. 

 

I did have a lot of body issues, at first, with this rubber band sitting there in my butt, but I have a great husband, and a good therapist that I see when things get overwhelming. I do recommend therapy. I work with a great supportive care physician who is super supportive of therapy for himself and everyone else, and hearing his views really hit home for me.  I thought I had thought it all out, that I'd considered all sides, and she brought In perspectives I never thought of. Plus, I had major guilt over my daughter's IBD dx, and she really helped with that too.   I seriously recommend therapy, if you haven't considered it. 

I've had my seton since June '12.  I have what is termed a complex Pouch-Vaginal fistula; however, the fistula does not exit through the vag. itself, it exits just outside of it - I would call it perineal, but ... semantics, according to my docs.

Yes the seton takes time to get used to.  Keep reminding yourself how it's keeping the fistula open so you do not abscess.  After living with the seton for going on 3 years, I feel that I could easily live with it forever, the only concern being marital relations are ... difficult due to the location of the exterior hole.   Otherwise, there is no pain unless it's accidently tugged - in day-to-day living, I really don't feel its presence anymore.

None of my docs have recommended biologics.   It would be my choice not to take them, but I certainly respect others' decision to try them.  I was told by my surgeon that with the seton in place,  the fistula is given a chance to create a type of "healthy" skin inside it, which will keep it from becoming infected and preps it for surgery if need be.   As I am in no rush for any surgery attempt to fix the fistula, I am living well with the seton and will probably continue to do so indefinitely.

 

I have found that a cotton round (make-up remover) "contains" any kind of drainage in the area.  It's also important  to use a skin barrier to keep your skin healthy.  So glad to hear you have a bidet - life saver.  And as noted above - sitz baths.   Take some "me" time - I've found walks to be very therapeutic - especially when there is sun.

 

Sorry you're going through this - please keep us updated on how you're doing...

Agree on sitz baths and, for me, 2x2s just right at the exit. I sometimes have used the makeup rounds, too, but they sometimes don't seem to hold up as well, in the place I need them.

Thank you ladies.  I really appreciate it. I think i was on the super emotional train and just needed to hear that it can work out.  I have been wanting to see a therapist, lots of guilt and health and body issues and my poor boyfriend can't keep up with me draining all of it on him.  I'm lucky to have a great support team in my friends, family and my boyfriend.  His brother has Crohn's so he has a unique understanding that most "normal" people don't have.  

Having said that, part of the reason I'm so adamantly against the biologics for myself is that his brother developed terminal lymphoma induced by taking Humira.  He's 26 and they said he'd be lucky if he makes it to 28. I know the risk is rare, 5% isn't high, but having known someone that it happened to makes it much more real to me.  I do know lots of people that take it and are happy with their decision though.  this new entivyio doesn't seem to have the cancer risks, so maybe that's a direction I can ponder.

I am doing much better 9 days out from surgery than I was just 5.  So that makes me much more hopeful.  I'll have to try the cotton round.  The drainage seems to be slowing down and wearing pads is such a pain.  Really not looking forward to the first I have my period... eep!  

Thanks again!!

For what it's worth, you can't really know that his lymphoma was caused by the biologic, though I don't blame you for the suspicion. I have a good friend who developed lymphoma at 25. Sometimes it's just bad luck.

The booklet my surgeon gave me before my surgeries said cuffitis affected only 4% (or some other ridiculous percentage).  My dad survived a surgery that his surgeon said only 10% survive.  My husband wanted to rely on a 25% prostate cancer risk to not have the biopsy that lead to his diagnosis performed. I convinced him that playing the percentages isn't something reliable to do when your health is concerned.  He had prostate cancer and it required it's removal or radiation.   Radiation could have done damage to his rectum.  After living with me the last 19 years he didn't want any chances of a damaged rectum and elected the surgery. 

 

I felt the same way about biologics before my surgeries.  It was one of many factors that made me decide on the surgeries. I still feel that chance is too risky as someone has to be in the 5 or whatever percentage.  That's because I tend to see these risks as black and white when there isn't a clear yes or no choice.  At what point would I venture into the gray area and try a biologic?  I don't know anymore. I thought choosing the j-pouch surgeries was going to "cure" me.  My husband can still have cancer if his cancer metastasized somewhere else and is undetected.

 

There's not too many black or white answers when it comes to our health.  When we choose wrongly it could make our health worse than we thought.  

 

It reminds me of an old accounting joke.   An employer was interviewing for a new Controller. She interviewed for several days. The applicants were dressed in their CPA suits and had outstanding credentials.  She asked all the applicants this one last question. "How much is 2 plus 2?"  They all replied 4.  The final candidate's appearance was disheveled.  His suit was rumpled, he hadn't shaved for a few days and he had bloodshot eyes.  "How much is 2 plus 2?"  With no hesitation the final guy said "What do you want it to be?"  He got the job.

 

There are gray areas as it depends if you are talking before tax, after tax, with one inventory method or another etc. Our bodies have a zillion different variables. All we can do is weigh all the options and potential outcomes in our particular circumstance and then decide our course of action. The longer these treatments are used the more knowledge the medical community gains about them.  I felt that I was too old to wait for an UC cure cure so bypassed biologics.  If I'd been 24 instead of 54 my answer might have been different.