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02-03-2016, 09:27 PM   #1
Chicagomom3
 
Join Date: Feb 2016
Location: Hinsdale, Illinois
Fistula question

Hi, anyone help me understand fistulas? My son was diagnosed with crohns a little over 2 years ago. He had moderate to sever crohns from the esophagus to the anus, with ulcers all over. They started him on steroids, flagyl and pentasa. I begged the doctor to take him off steroids after a year. this combo of drugs put him in remission and he has stayed there. However his MRI s are showing 3 fistulas, however none of them go all the way through. Doctor isn't concerned because they are getting worse, but they aren't getting better either. My son will leave for college in the fall and I'd like to get these healed before he leaves. Any advice? Thank you
02-04-2016, 06:08 AM   #2
my little penguin
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Can you get second opinion?
Steriods should never be used as a maintence med and neither should flagyl
Flagyl typically causes neuropathy when used long term.
Short courses are ok but not long term
Steriods will cause osteoporosis glaucoma cataracts diabetes adrenal insufficiency etc...when used long term.

Pentasa is a 5-Asa and only treats the surface of the intestine but crohns goes through all the layers so it is not approved as a monotherapy for this reason.
Most Gi equate pentasa to give aspirin for a brain tumor
Not going to hurt but not going to help either


The new goal in Ibd is complete mucosal healing ( no ulcers )
Leaving inflammation simmering is never a good idea since it can lead to surgery .

Hugs
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02-04-2016, 09:12 AM   #3
valb
 
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I agree I would go for a second opinion. I am no Dr but been living with this disease for 11 urs and feel like I have been on every med out there. In my opinion he needs better meds then that combo for moderate to severe. I would also hate for those fistulas to get infected and form an abscess. That's what happened to me and it is one painful experience!!
02-04-2016, 10:45 AM   #4
Grumbletum
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I would be concerned to. I' m wondering where they might break throught to i.e are thet eneterocutaneous? Anal? I guess it might be hard to tell.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
02-04-2016, 11:18 AM   #5
crohnsinct
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Sorry to join the chorus but if he has 3 fistulas he is not in remission. I would seek a second opinion.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-04-2016, 11:30 AM   #6
ronroush7
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I agree I would go for a second opinion. I am no Dr but been living with this disease for 11 urs and feel like I have been on every med out there. In my opinion he needs better meds then that combo for moderate to severe. I would also hate for those fistulas to get infected and form an abscess. That's what happened to me and it is one painful experience!!
I agree. Go for a second opinion.
02-04-2016, 03:57 PM   #7
JaimeM
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I have a fistula right now too and am doing flagyl and cipro to try and resolve it. She said it could take several months to clear up. I'm also on Cimzia which helps with fistulas. What do you mean if they aren't all the way through? A fistula is a connection between something, whether that's skin, other bowel, bladder.. So a fistula to be called a fistula is connecting something to something else.. Maybe that's why. Also your GI may not agree with what the Radiologist called a fistula on the MRI. It's just some ideas. I hope you get that resolved before it gets worse for sure.. Better to catch things and deal with them as soon as possible Just call your GI and express your concerns
02-04-2016, 05:35 PM   #8
lchele1203
 
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I had three fistulas a few years back. I was on Cipro and it helped a lot. But I also had two seton drains put in for 1 year. I got tired of the drains and told my GI to take them out. It has been over 2 years and no reoccurring issues.. Good luck.
02-04-2016, 08:52 PM   #9
valb
 
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I had three fistulas a few years back. I was on Cipro and it helped a lot. But I also had two seton drains put in for 1 year. I got tired of the drains and told my GI to take them out. It has been over 2 years and no reoccurring issues.. Good luck.
Just curious...were they still draining after a year? Just got my Seton 3 weeks ago now and can't wait to get it cut lol.
02-05-2016, 05:03 AM   #10
Sascot
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I also agree on a second opinion. It sounds like he needs a proper maintenance med like Remicade if there are fistulas. My son is on mercaptopurine which keeps things in remission but can't actually heal fistulas once they are already formed. You could ask about fistula plug surgery depending where they are, that helped my son.
02-05-2016, 01:40 PM   #11
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Mine were not draining after a year. One actually fell out and the other I had my doctor cut. I hated them. They always rubbed me raw and I was miserable the whole time I had them. If I had to get another one I would only keep it for 6 months no longer.
02-05-2016, 02:24 PM   #12
CrohnsKidMom
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Welcome to the forum, but I agree with the others-a year is too long on steroids, and he should have been placed on a maintenance med. I hope you find a dr who will respond better to your son's condition.
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02-05-2016, 02:51 PM   #13
ronroush7
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Agree

02-05-2016, 05:06 PM   #14
malorymug
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Hi. My 15 year old is dealing with fistulas too. He have one on diagnosis 2 years ago and was put on 6mp because it is good for fistulas. He didn't improve in 9 months so we moved to Remicade which is also good for fistulas. 1 year later he has 5 fistulas and 2 abscesses. We are upping the Remicade and doing 6 weeks worth of cipro and flagyl.

I would highly recommend getting more agressive with treatment. Fistulas are a result of uncontrolled inflammation. The body creates a tube that goes from one organ to another. Fistulas lead to long, painful, and gross treatments.

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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
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