Seton Questions

[JodieB]

I am waiting to hear back from my specialist on when I will be going for my surgery for my fistula(s) - they make a W in my perineum if I'm understanding correctly. I will either be having a seton or two put into the fistula(s) or a fistulotomy, depending on what the dr finds when she goes in.
I have a few questions for those who have had such procedures done. I am new to the whole Crohns/fistula world and I am trying to wrap my head around everything.
I am getting married in three months and my fiance and I were planning on starting a family as soon as we got married. Is it realistic to get pregnant and have a healthy pregnancy with a seton in? Are there complications with it? My fistula(s) are located in my perineum and anus does this impact how that might affect a pregnancy? If I were to not have the surgery until after having a baby, what are the options if (and more likely when) an infection happens?
What is the recovery period for all of this? I am not on any medication (other then the antibiotics when I get a flare up with an infection) will this change? They are not finding any indications of Crohns in my bowels other then the very active fistula's I have which are not on the surface (more internal) I have had surgery to have the initial abscess released on the right side and I have had the left side lanced but the 6-8 infections I have had in between have not come to the surface.

Is anyone able to shed some light on the subject, I'm very anxious and nervous about it all because being a teacher, having a baby is something I have been waiting for and I'm scared this is going to change everything.

 

[EmilyElizabeth]

Hi Jodie!
I recently had similar surgery and got a seton. It went great, no complications and I am very happy with the seton, no more pain or swelling. I am also planning on starting a family soon (be sure to creep the ttc/parenting subform!:ysmile and I would definitely recommend getting that taken care of before trying to get pregnant. That's because it will basically take care of the infection/keep it from building up, which you would not want to happen while pregnant, and want to avoid needing long courses of antibiotics. My specialist is fine with me getting pregnant, just told me that I'll be considered high risk because of the Crohns so monitored closely, and I'll be having a C section. After having fistulas and setons you are probably going to want a section so you don't risk tearing things up further down there(however it is still ultimately an individual decision).
Also, if you keep getting fistulas, you might want to look into getting on some crohns meds to stop that. Have you considered any treatment, or had testing done?

 

[AlliRuns]

Have you been diagnosed yet? My Crohn's presented in the same manner, fistulas, it took a long time to get a diagnosis, over 7 years from initial fistula.

It's not impossible to get pregnant with a seton, but realistically, you may find sex painful depending on placement of the seton. I had two setons and it was pretty much out of the question. Your GI will probably also recommend you have a c section. I have also read that pregnancy could complicate fistulas, but maybe somebody with experience could comment on that part.

Some newer literature recommends biologic therapy as a first course of action over surgery. It depends on the doc. This may not be an option if you want to get pregnant though. Some others recommend surgery in conjunction with biologics.

 

[JodieB]

I'm not sure if I have been officially diagnosed - my specialist said to me that essentially crohns disease is the only reason why someone my age would have this happen to them. So I'm not sure what kind of diagnosis that would be. I have been for several MRIs, colonoscopies, scopes etc. My GI had told me that she did not see any signs of Crohns in my bowels, so I'm quite confused by everyone's answers.
EmilyElizabeth may I ask where your setons are located and if they affect your sexual relationships. Currently with my fistula intercourse can be quite uncomfortable in the wrong position therefore I'm under if putting a seton in will make this better or worse (to be honest I'm quite scared) Starting a family is extremely important to me and I'm not sure if having the seton done before getting pregnant and hoping that it doesn't affect sex or take my chances and go without it for the pregnancy. The only problem with waiting is that I haven't gone longer then 6 weeks (and thats been only once) without having an infection/fluid that needs to be treated with antibiotics.

 

[Sailorluna]

Jodie,
I have have two fistulas one rectal one vaginal. At one point I had seton in both and sex (although sometimes feeling odd) was still an option. As others have said thus may have more to do with exact seton placement than anything. At this point I do have days that sex is an option mostly from skin irritation from drainage. Calmoseptine cream is helpful but not perfect.

You should talk to your gi and/or surgeon before making a decision like this. Once pregnant you medicine options are very limited. I have had two children and the docs were very resistant to giving antibiotics until I was so sick there was no choice.

I understand that you dearly want to get pregnant quickly but it would be a safer pregnancy if you got the fistulas under control before hand. The seton should not delay it by very long and will help prevent the abscess/drainage cycle.

 

[KWalker]

I'm happy you're receiving some help Jodie. I was mistaken and it is Sailorluna that is the expert with setons. I hope you get some answers soon so you can start a family!

 

[EmilyElizabeth]

Jodie, my seton is a rectal one on the left side. My sex life actually improved after I got it because I am no longer in pain from it! I also have a very understanding partner who isn't fazed at all by it so that helps. I am extra careful now though that I don't pull it by accident lol. If you have a vaginal one like Sailorluna mentioned I can imagine it would be different.

Good luck and let us know how it goes for you!!

 

[JodieB]

Sailorluna you are completely right, I would rather be safe the sorry. Unfortunately I think emotions sometimes get the best of me.
I am on a new round of Cipro and Flagyl. I'm hoping I'm not too sick on them. I find I have a really hard time stomaching them (something I definitely would not want to do preggers) Any tips on helping calm the stomach with the meds?
Thanks for all of your advice. I talked to my surgeons nurse yesterday and they advised I wait until after my wedding (beginning on May) to have any procedure done and that the antibiotics will suffice for right now. They were hoping to have me in for my surgery at the end of the month but because they still aren't sure what procedure they will be performing until they investigate she advised we wait. I'm kind of okay with that - either way I think I would have more fun at my wedding without a seton leaking or still healing from the fistulotomy.

 

[AJ17]

Hi JodieB and others,

I'm just curious to hear how your story turned out. I had a sweet little girl who is now almost 3. We were about to start trying for #2 when I developed a perianal abscess that then turned into a fistula. That started about 2 months ago. I have no history of Crohn's and no other symptoms, but of course now doctors are all asking me if I have it. I'm getting a colonoscopy and MRI soon. Anyway, I got a draining seton put in earlier this week. So far it's going well, but I've just found with this whole ordeal that things can be finicky. My surgeon (a general surgeon - I know I should get a CRS, this has all just happened so fast) said that it is a short fistula which bodes well for healing. She also said my abscess is for the most part gone. I'm off antibiotics now, so we'll see how that all pans out. Anyway, this wouldn't be such an issue for me if I didn't want to have another baby. I'm 36 and don't want to wait too long before ttc. My dr seems to think that we'll know really soon if things are healing well and that if all looks good at my follow-up in 3 weeks, I should go ahead and try. She said we could just leave the seton in. Of course, reading online, there are so many stories about how complicated these things can be and like you, I'd rather be safe than sorry. But I'm just also aware of my age and my daughter's age and how much I'd love to have two babes. I'm praying that things will heal well. Any updates would be appreciated. Thanks everyone!

 

[Jay Woodman]

@JodieB I was also diagnosed with Crohn's based on an initial abscess presentation that turned into an initial fistula. Scopes & biopsies failed to provide a concrete tissue diagnosis. This confused me terribly & thus I was hesitant to begin Remocade until a few years later. Following the presentation of two more abscesses & two more fistulas...Again, another colonoscopy failed to provide concrete biopsy support. I finally decided it was time to agree with my GI & start a Biologic..

 

[MikeinBklyn]

Having had two fistulotomies I can tell you that with the first one it was not too painful but it take a few months to fully heal. The second was more painful. It was only when I was put on Humira that the fistula (perianal) fully closed and healed.

Whatever the outcome, remember to keep the area as clean as possible!

Good Luck