I have my first fistula that opens to the outside. Help?

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Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 8/3/2010 6:37 PM (GMT -7)   
So, I thought I had a pilonidal cyst so my GI called in antibiotics but things just got worse and finally, it just started to drain (what seems like) massive amts of blood. I finally called my GI today since after 10 days of antibiotics, it was only getting worse.
I couldn't see what was going on. It feels like it's on my tailbone so it's very deep. It felt like an absess or something. They looked at it and there is about a 1 cm hole way down in there just draining blood.
Anyways, GI decided it wasn't pilonidal but instead a fistula. I've had fistulas before but all inside. He said there isn't much to do but treat the Crohns. I've been on 6MP since my resection (Feb 3) but we know the disease is active again thanks to colonoscopy a couple of months ago. We had hoped the 6MP would keep it controlled but he's putting me on Cimzia again.
I'm in quite a bit of pain, can't sit, lay on my back, or bend without lots of pain. They told me to continue Levaquin to help avoid secondary infection and take Vicodin for pain.
My life is VERY busy right now and this is really dampering things. I'm struggling to keep up. Is there anything else I can do? What do you do for yours? How long do you usually deal with one before it goes away?
I'm trying to be upbeat about it... it's certainly not the worst thing I've experienced but I just had so much hope the resection would buy me more time. I'm disappointed.

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Date Joined Oct 2008
Total Posts : 1343
   Posted 8/3/2010 6:56 PM (GMT -7)   
I used to have 3 external fistulas. Sitting in a really hot epsom salt bath every night brought relief (I would have lived in the tub if I could). I also used this little frozen device meant to soothe hemorrhoids (I think it was this http://www.anuice.com/) whenever I had time. The cold helped numb the pain.

It's too bad the 6MP isn't working. That and Imuran were the only meds that ever helped my fistulas. I didn't actually get rid of them until I started SCD (took 4-6 months if I recall). Butt problems really are the worst :-(.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 8/4/2010 3:29 AM (GMT -7)   
Hot Sitz baths do help!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008
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