Fistula? Please help.

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Regular Member

Date Joined Sep 2003
Total Posts : 62
   Posted 9/10/2008 7:14 AM (GMT -6)   
I have Crohn's and I am prone to anal fistula's but about 4 years ago I took remicade and I hadn't had a problem since.  In June I had my gall bladder removed about a week later I had severe pain when I went to the bathroom - it felt like the muscles in my butt cheeks were on fire.  My doc. put me on Flagyl for three weeks because we didn't know if it was a hemorroid or fistula, at first it didn't get better and he referred me to a colon rectal surgeon which took two weeks to get an appointment.  Just before I go to the surgeon pain goes away.  I go anyway, he does his lovely exam and sticks that small scope up there to see, says he doesn't see any current fistula activity but their is a suture and a small ulcer but no infection.  After the exam I start to have horrible pain around my tailbone - where the old fistula abscessed.  A week later I can't sit, lay down or walk I am in so much pain I have night sweats - when I am able to sleep, plus a temperature.  So I go back to see him he says no infection and still can't see a fistula but the fistula may be active in the channels it had created before so I am back on the Flagyl and I he had me call my doctor to put me on an anti-inflammitory.  Taking antibotics for a day and a half and no noticeable change.  The pain is the worse I have ever had.  Now I am beginning to doubt it is the fistula.  I do the bad thing and start researching online - what if it is some disease of the coccyx that I read about or worse cancer.  I am going on vacation to L.A. this weekend...4 hours sitting on a plane.
Someone please tell me this is how they felt with their fistula - I can't remember and now I am worried I have something else. cry

Regular Member

Date Joined Sep 2008
Total Posts : 76
   Posted 9/10/2008 8:18 AM (GMT -6)   
I know exactly what you are going through.  That pain is something else.  I was on antibiotics and flagyl but it did not improve.  I think maybe you need to go back on Remicade.  Its the only thing that keeps the Fistula's away for me.  Ask your doc to set up an MRI for you and this will tell you exactly what is going on.  You poor thing I can still feel that pain.   I'll be thinking of you.  God bless and good luck :-)

Regular Member

Date Joined Dec 2007
Total Posts : 131
   Posted 9/10/2008 11:08 AM (GMT -6)   
I am prone to abscesses and your description sounds a lot like how I feel when I have one. (Which I think I do right now.) I have lots of pain in my joints and the night sweats are really getting annoying. Might want to ask about the possibility of an abscess.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 9/10/2008 2:57 PM (GMT -6)   
I think you have an abscess also. Just because he can't see a fistula doesn't mean that you don't have one. A ct scan will show for sure if it is an abscess. You don't want the abscess to burst inside of you. If you do have one, you need to have it surgically drained.

Veteran Member

Date Joined Feb 2004
Total Posts : 730
   Posted 9/11/2008 12:57 PM (GMT -6)   
yES that is exactly how I felt when I had fistuals and didn't know i had them ..the pain was unbearable - I tried everything to relieve the pain ; but finally began to bleed alot which put me in the hospital ...
so, demand to be checked further ..something is wrong ... go to a different doc
I hope you are better by now !
Dx with Crohns 25 years ago
1 surgery ; 16 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  cymbalta, dIovan HCT, tramazone,
Remicade, FML (eyes ; steroid ) , Restasis (eyes)   

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