Can you feel fistulae forming???

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Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 7/21/2008 12:42 PM (GMT -6)   
Just wondering....Can you feel fistulae forming before they break through the skin?  I've had a fistula to my bladder so I know I have fistulizing Crohn's.  I could feel when air/stool passed through because whenever that feeling came I'd pass air the next time I urinated.  I just can't remember feeling it form though.
I've been having aches right around my tailbone area and worry that I might be developing one there.  My daughter had a perianal fistula.  That is how we discovered she had Crohn's.  It's funny how we both were diagnosed through fistulae.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (27) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

Regular Member

Date Joined Oct 2005
Total Posts : 168
   Posted 7/21/2008 3:52 PM (GMT -6)   
I could feel when my fistula came on last year. It's a rv fistula, so at first I thought that I had some kind of vaginal cyst. But I started to get really nauseated and started vomitting. I ended up in the hospital and truthfully they didn't think much of the cyst until they decided to open it up in the OR. then it was obvious what it was and they transferred me to a better hospital in another state. about 2 weeks ago i started feeling another one coming on in the same area (even though the first isn't healed yet). My surgeon put me on antibiotics to try and heal it before it got too bad. To me, it basically feels like a sore lump. the first fistula got so big before we new what it was that it was pretty much obstructing the whole outside of my girl area and was as big as a golf ball. It also caused an infection to creep into my lower abdominal skin and up my belly. For a while they thought they were going to have to make incisions in my skin layer and scrape out the infected tissue. overall, it was a miserable experience and more painful than my gut resections. I haven't had fistulas in the tailbone area, so i'm not sure if they feel the same or not. i'd call your doc and see maybe if you should start a round of antibiotics to be safe. good luck!!
diagnosed: Crohn's Aug 2005
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN

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