Treatment for a fistula

[JBA]

Hi I'm new to the group. My son was diagnosed with severe crohns in Dec 13, then aged 11. He was initially treated with a liquid diet (Ensure) for 8 weeks and was started on azathioprine and pentasa. A year ago he began inflimimab for perianal pain/ a fistula. A recent MRI scan showed that the fistula is still there. The consultant is suggesting a seton stitch and increasing the frequeny of his infliximab to every 6 weeks. I've read about adults having a seton but haven't come across any children having it done. Has anyone experience of a seton with children?
Thanks

 

[fuzzy butterfly]

Hi and welcome im sorry your son has this disease.. im afraid i have no knowledge of children and setons. As it is I that has crohns. I just wanted to say welcome to the group and send you my support. Im sure someone will be along who will be able help. Best wishes

 

[malorymug]

Hi. Welcome to the group. My son is 15 and has fistulas too. I'm afraid I don't have too much information for you. Our doctor is not talking about setons and I didn't ask him. We are currently dealing with abscesses and trying to avoid surgery with antibiotics. When the infection is gone we will be increasing the dose of infliximab to 10mg/kg every 4 weeks.

When I go over to the adult section about fistulas I get very discouraged. There are several families in this group that have successfully treated fistulas and abscesses.

 

[Sascot]

My son had a fistula but they never used a seton. They tried a fistula plug to close it.

 

[fcbeach]

My 14 year old started getting a fistula in mid-December 2015. Mid-January, he ended up getting surgery, getting a seton inserted. After another procedure, he was diagnosed with Crohn's. Right now we are waiting to get his first round of Remicade. The seton is still in place and the area is still emptying and hasn't healed completely. It is much better than it was before. The seton is uncomfortable and there is discomfort when he has a bowel movement. The first couple of weeks were very painful but I think it was because of the constant bowel movement and the fistula draining. It is slowly moving out naturally. Per the docs, they said that it should come out naturally after he gets his first round of Remicade. Hope this is helpful

 

[Gmama]

Hi! My son is now 15 and unfotunately has had 4 abscess/fistula surgeries with a seton placed each time. The idea of the seton is to keep the fistula open acting as a wick so that another abscess doesn't form. We have left them in anywhere from 4 weeks to 10 months, but there are adults that leave them in for years but that's not typical for kids. The setons don't bother my son but if it's making a kid crazy they take them out sooner. These poor guys dealing with these things is awful, but usually they heal up once the Crohn's is under control, but not always & that's the boat we are in. Either way you just need to manage each situation as it comes up.

 

[JBA]

Thanks everyone for your posts. FCbeach and Gmama what did you tell your children about the seton before the procedure? I have talked a bit with my son but he is very anxious and I don't want him worrying. We haven't even got a date yet. Has the seton affected what your boys can do? When he's up to it my son loves to play football and sport at school.

 

[Gmama]

Early on we had a really REALLY hard time getting the Crohns under control. A year & a half ago we switched all of his care to CHOP & it took some time but the got him on track. So now he is very active and run cross country & track. He had 3 setons placed right before Christmas but is still running a ton (just on his own for fun since it's the off season right now)
Before the first surgery the ped surgeon drew him a picture of what the seton was & where it was going to go. It was defiantly hard for all of us to get our head around it all! But I told him that tons of people have this done and there are lots of kids his age that have this same problem & yeah it sucks but" it is what it is " & we are lucky that we have good medical care to take care of this. Depending on the abscess and location and basically how much cleaning out & cutting they need to do the recovery is really not bad or long.
Also, every surgeon we have had has really made it clear that we don't need to leave it in if it's bothering him too. He just needs to speak up.
Keep us posted.....positive thoughts & prayers his way!

 

[malorymug]

Gmama!! Thank you so much for your positive post!!! It was so wonderful to wake up to. I tossed and turned all night thinking that my child's care is being mismanaged and not aggressive enough. Your post was inspiring. To hear that your boy is running with setons is great. To hear that he has enough energy to run is amazing!! And today I have hope.

 

[Jackman34]

Malorymug

I am brand new to this site tonight. My son is also 11 and was diagnosed with Crohns a year ago. We had no idea what was going on and it all started with an abscess caused by a fistula. He had a seton put in last March and started Remicade. We tried to remove the seton about 2 months ago and unfortunately the abscess came back and the seton had to be placed back in. He is now scheduled to have the lift technique at the end of March.

My son plays competitive basketball and baseball. It has been inconvenient but he has kept a great attitude and continues to excel in sports and school.

It is hard to see your child go through this. We are still learning and trying to figure out what the best options are for his long term health.

 

[MamaZ]

I'm also new here, my 12 yr old son just got diagnosed with CD ..we've been treating a perianal abscess for A month and half outpt with abx but we didn't reallze he had a fistula until he started complaining of inside pain..we took him to hospital where he undergone multiple traaents and procedures, one of which is an I&D for the abscess ...the GI and Surgeon didn't mention he needed a seton, just Cipro and flagyl ...we are starting first Rwmkcade infusion tomorrow!...we are praying for it to work!
It is so hard indeed to see your child go through all this!! A lot of learning to be done here as well! We'll take it a day at the time!
Good luck to all )

 

[malorymug]

Malorymug

I am brand new to this site tonight. My son is also 11 and was diagnosed with Crohns a year ago. We had no idea what was going on and it all started with an abscess caused by a fistula. He had a seton put in last March and started Remicade. We tried to remove the seton about 2 months ago and unfortunately the abscess came back and the seton had to be placed back in. He is now scheduled to have the lift technique at the end of March.

My son plays competitive basketball and baseball. It has been inconvenient but he has kept a great attitude and continues to excel in sports and school.

It is hard to see your child go through this. We are still learning and trying to figure out what the best options are for his long term health.

Awesome! Thank you! That's great to hear your son is doing so well despite the abscess and seton. I love to hear when kids are active. You will have to come back and tell me how the LIFT technique went!!

My son is doing better. We are actively working on his stamina and endurance now that he is out of pain. I can't imagine he'll ever be in a competitive sport but it would be great to have him not just sleep after school.

Thanks for your post!

 

[malorymug]

I'm also new here, my 12 yr old son just got diagnosed with CD ..we've been treating a perianal abscess for A month and half outpt with abx but we didn't reallze he had a fistula until he started complaining of inside pain..we took him to hospital where he undergone multiple traaents and procedures, one of which is an I&D for the abscess ...the GI and Surgeon didn't mention he needed a seton, just Cipro and flagyl ...we are starting first Rwmkcade infusion tomorrow!...we are praying for it to work!
It is so hard indeed to see your child go through all this!! A lot of learning to be done here as well! We'll take it a day at the time!
Good luck to all )

Welcome! My son too, is on Cipro, Flagyl, and Remicade without a seton. I hope and pray that the medications will work for both our boys.

I know the first Remicade infusion is scary. I hope you have read some other threads about it. We love our remicade and the day at the infusion center is nice for my son. He gets doted on by the nurses and it is all very peaceful. My son feels better immediately after the infusion, I hope yours will to.

 

[shay84]

Hi I am new here my daughter was diagnosed a year and a half ago with Crohn's @ the age of 11. She didn't have the regular signs and symptoms for Crohn's but they did a Mri and a biopsy to confirm. She has a fistula they started her on Cipro and Flagyl that didn't work then she was on Remicade for 4 maybe 5 months at first it was working but she was getting really sick she was never one to get sick you know like with colds or fever or whatever but then after each treatment maybe 10 days after she'll get high fevers 102,103 fatigue,joint pains picking up random infections I know these are some of the side effects of Remicade but it didn't help and I was hoping that it did . She's now gonna start 6mp I hope that it helps because it seems like it's just going from bad to worst .She's active if you see her you wouldn't know anything is wrong, at times she has a strong odor . I'm worried because when she was on Remicade I was happy because I knew she was getting the medication through infusion but now she'll be taking pills and that's going to be a fight . It's a lot more but ...

 

[CJMom]

My son is on Remicade and methotrexate. He also has a perianal fistual as well and they moved his infusions to every 6 weeks. They also added Cipro for 2 months to help with the fistula. It has helped tremendously. He has seen a colorectal surgeon as well who is the one to put him on Cipro. He did discuss a seton as a possible course of treatment but at this time the Cipro and the 6 week infusions have helped. He can barely detect the fistula and more imprtantly my son is feeling better.

 

[Jenn]

My son didn't have a seton, but did do 8 weeks of IV antibiotics that healed his (2nd) fistula - flagyl and ciprofloxacin. Then, he started remicade. His first fistula was laid bare by surgery and was part of his dx.

 

[Jackman34]

We had to have the Seton placed because the outer skin would heal, causing an abscess to occur.

Can anyone tell me what your doctors are doing to monitor the fistula size?

 

[malorymug]

We've been doing MRE and MRIs to monitor the size. My boy was just diagnosed in January so we are fairly new at this. They did the MRIs every 2 weeks and now we just moved to monthly until it resolved.