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05-08-2017, 07:51 PM   #1
Kjtomasula
 
Join Date: May 2017
Location: Sandusky, Ohio
Help with fistula

My son was diagnosed w Crohns in Oct 2016. Nov 2016 he had an abscess. After 5 surgeries and 3 diff drains for fistula we are still struggling....he's on Humira and Imuran. He does ditz baths everyday and is on 2 antibiotics. It keeps filling up and causing him pain even tho he has the drain in. Any advice or things we can try...so frustrating!
05-08-2017, 08:06 PM   #2
my little penguin
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How often is he getting humira ?
Ds gets humira every 5 days plus takes mtx
So dosage can be bumped up if required
Has he tried remicade ?
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DS - -Crohn's -Stelara
05-08-2017, 08:20 PM   #3
Maya142
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Poor little guy!! That sounds miserable.

We have no experience with fistulae but there are more medication options now. Like MLP said, there may be room to increase his Humira. There is also Remicade, which tends to be used most often for fistulae.

There are two new meds - Stelara and Entyvio but I have no idea how well the work for abscesses or fistulae. Stelara is newer - just approved in September 2016 - but some pediatric GIs are already using it. Entyvio has been approved since 2014 and is being used more.

You may also want to think about a second opinion - Cincinnati Children's, Boston Children's and CHOP are the three big pediatric IBD centers.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-08-2017, 08:28 PM   #4
malorymug
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Location: DFW, Texas

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We too are struggling with a fistula. My 16 year old's fistula is a high anal and in a very precarious spot. Pain of this problem spot started 15 months ago. He has had 3 surgeries, one seton placement and endless outpatient draining procedures. My boy has just been referred to an adult colorectal surgeon. We meet with her tomorrow. I think she will propose several other surgical options.

My kiddo is on remicade (10mg/kg every 4 weeks) MTX, and cipro. He is clinically in remission and would probably be great if it wasn't for this little pain in the butt.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
05-08-2017, 08:32 PM   #5
Kjtomasula
 
Join Date: May 2017
Location: Sandusky, Ohio
How often is he getting humira ?
Ds gets humira every 5 days plus takes mtx
So dosage can be bumped up if required
Has he tried remicade ?
He was a on Remicade for 2 treatments b4 Dr switched because nurses couldn't get iv in...he has terrible veins. His a humira was spaced to every 3 weeks as his levels were high. His crohns seems to be under control but this fistula won't go aaway.
05-08-2017, 08:37 PM   #6
my little penguin
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Really every three weeks ....
Ds levels have been high before and they still have him at every five days
Since the dose timing fixes his issues

Spreading the dose out further than recommend (standard is every two weeks since humira has a short half life ) when your kiddo still has issues ?? Wow 😳

I have never heard of stopping remicade due to bad veins
95% of the Crohns kids here have bad veins from so many pokes

Can you get a second opinion at a big ibd hospital for kids
05-08-2017, 09:02 PM   #7
Kjtomasula
 
Join Date: May 2017
Location: Sandusky, Ohio
Eeek makes me concerned you think I need 2nd opinion....
05-08-2017, 09:06 PM   #8
Maya142
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Most kids have to be poked multiple times.I would agree - get a second opinion. It would be a shame to give up on Remicade, which is the a very effective treatment for fistulas just for bad veins.

It's not ideal but they can even place IVs in the feet if they can't find veins in the arms.

There are VERY few IBD meds, especially for a kiddo with severe IBD, so you don't want to run through them too quickly.

Humira shouldn't be given every 3 weeks. The only time I've ever heard of that is if the child is in remission and has been stable for months to years. Then they sometimes try to lower the dose.

For a kid who is not remission and has a fistula that won't heal, that is not the standard treatment.

The levels don't really matter as much if they're too high - as long as his WBC is ok. If they're too low, that's when it's a problem.

We have been all the way up 4x the normal dose for Remicade. I'm sure my daughter's levels were very high at that point but that was not a concern for the doctors. The point was to get her into remission.
05-11-2017, 12:44 AM   #9
Sascot
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My son ended up with surgery. They tried a new fistula plug. They went into the fistula and debrided the channel then inserted the plug. Unfortunately the plug fell out but by irritating the inside of the fistula it ended up healing and going away. Its worth asking about
05-11-2017, 03:24 AM   #10
Akahana123
 
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Join Date: Feb 2014
Location: Texas
Before I was diagnosed i had an anal fistula (which 3 doctors mistook for a cyst) and had it "popped" multiple times (I was about 16/17), finally found a doctor that knew what is was and had to get a tube/tunnel inserted into it, it was painless and have not had a problem since.
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