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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Questions for Users of Antibiotics w/ fistula



07-28-2012, 10:09 AM   #1
puppylove
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Questions for Users of Antibiotics w/ fistula

For those of you who have taken antibiotics for a fistula - How long did you stay on the antibiotics for? What happened when you stopped taking the antibiotics? Did you take another medication and/or change your diet?

My GI doctor gave me a prescription for many months of antibiotics (cipro + flagyl) and said that some people take them for months or years! I know that some people can develop resistance to the specific type of antibiotic if they take them for 'too long' so I'm wondering what the long-term outcome has been for others with CD and a fistula.

I have an enterocutaneous fistula diagnosed by MRI with no abscess - it went away for 4 months and when it returned I immediately started taking antibiotics (because that's what the GI doc said to do should it act up again). I took them for two weeks, swelling went down - but when I stopped taking them, I felt it beginning to swell again within two days. So I started the antibiotics again and now it's been over two weeks and again the fistula feels mostly gone...

I'm wondering if I should try stopping the antibiotics again and if so, should I also be doing something else (like enteral nutrition) to help heal the fistula...?

[For about a week I was drinking Ensure to replace 1-2 meals but this is really difficult since those drinks have dairy/calcium and therefore can't be taken 2 hours before or 6 hours after the antibiotics... that basically gives me a small window of a few hours during the day when drinking Ensure wouldn't interfere with the antibiotics.]
07-28-2012, 12:28 PM   #2
Thermo
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I recently required surgery for 6 fistulas some healed and some open. The basic rule of thumb with fistulas is antibiotics first then biologics then surgery, in my case not a single fluoroscopy, MRI, CT scan picked up on the fistulas it was only on the operating room table did the surgeon find all of them. I had been on Humira for almost a year prior which everyone attributes to 4/6 of them being closed and turning into scar tissue. I would recommend taking a more forceful approach to these fistulas up to surgery my life was miserable due to the pain of them, and because the repair took so long and he repaired so much my recovery pain is miserable. At least now I can get some relive if even for a bit.
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Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
07-28-2012, 02:16 PM   #3
AlliRuns
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I had many years of taking cipro and flagyl for a couple of months at a time each. They help at first, but as soon as I stopped taking them, the fistulas become active again. Also the antibiotics made me feel miserable and made me susceptible to other things, like food poisoning.

I haven't been tried on biologics, I haven't been diagnosed with anything except "complex perianal disease", so it wasn't an option for me. Lots of people on this forum have had success with them so it's probably worth a try.
07-28-2012, 02:47 PM   #4
Sailorluna
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Hi there,
I have had my fistula since last Sept. They cleaned out the abscess and put in a seton. Sadly it still did not drain properly. It would get backed up, make new tracks and get infected. Pain would get steadily worse and the fever would come. Antibiotics helped settled things down but it never lasted long after I stopped taking them. They had to drain me three more times, this last time, in April, they redid the whole thing to be larger and now it drains properly and there is no more need for antibiotics or anything.

In my opinion if you need to keep going back to the antibiotics it could be a sign that you are not draining well enough. Just a thought. Good luck!
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
07-30-2012, 02:15 PM   #5
napster
 
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I've had a fistula since 12/10 and was on antibiotics since then - had a seton placed in July 2012, and went off antibiotics for about 3 weeks a couple months later.

Unfortunately, the drainage kicked in after the 3 week "trial", along with bleeding, and I did not feel well, so am back on the antibiotics. My surgeon said to take a minimum dose, and that is found by experimenting - for example, I could try a dose every other day, or dose 1 week out of 4, etc. I've ratcheted it up to 2 a day until things get under control (500 mg. augmentim, 2/day).

To avoid developing resistance to one antibiotic, you can look into rotating the antibiotics. For example, 3 weeks on one antibiotic, and then 1 week on a different family of antibiotic. Check with your doctor on this.

Hope you can get this under control.
07-30-2012, 03:06 PM   #6
Avw
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I have several large abscesses and fistulas, one draining with a seton, another 2+ going in to be drained tomorrow. This has been going on for months, and I've been on antibiotics the entire time. They don't seem to be doing much of anything for me, the only thing that helps my abscesses are surgeries. My only advice is this- find a good colorectal surgeon and make good friends with him! Chances are you'll be seeing more of him than you'd like! (If your abscesses are anything like mine at least)

Best of luck, and I hope you can get some relief soon. I know how miserable these little demons are!

Oh, and the enteral nutrition is not a bad idea. Especially if you have lots of diarrhea causing stress to the area, plus making sure your body has all the essential vitamins and nutrients it needs can only help the healing process! I'm going on TPN starting tomorrow as well (total parenteral nutrition) to give my poor bowels and butt a rest!
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
07-30-2012, 04:19 PM   #7
TammyKathleen
 
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Hi there,

I have 3 fistulas and 3 setons. I have been on antibiotics for six months, the entire time I have had the fistulas. Strangely, they don't seem to help or heal them, yet when I lower my dose, the drainage gets much worse. As I type this I realize that means the Cipro and Flaygl are in fact working...

I am also on Humira and I know if I am even a few days late with my next injection, my fistulas go crazy and I am in alot of pain again. I am on weekly Humira injections, plus 2 antibiotics. I opted not to have any surgery and live with the setons as I can't take another surgery right now.

Good luck.
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