Fistulatomy did not heal after more than one year

My story is not a very happy one. I was not diagnosed with Crohn’s till after my fistulatomy surgery, up until then I was told all I have is colitis and wound will heal in 4 weeks. After 4 month’s of not healing my GI had me do Serology 7 test that came back positive for Crohn’s with UC futures. Fistulatomy was performed in October of 2009, I now have what is called a keyhole deformity. Basically, my wound healed, but did not close at anal verge – exactly from my old external fistula opening down to my anal opening. It is leaking post BM, I have to wear a pad and put on protective barrier cream to keep moisture under control. I also have a lot of spasms and very high pressure in my sphincter muscle due to scar tissue and me constantly trying to “hold” my leakage. I went to many colorectal surgeons in my area – university professors and teaching hospitals and also to Cleveland clinic for “ultimate” and last opinion on how to fix this. Basically I was told I have to learn to live with this as any surgery in this area will end up with colostomy bag. My Crohn’s has been doing ok with Humira, still have occasional driea, cramps and hip pain, fatigue. So, my advise, do not rush in to surgery, try Cypro/Flagyl/Remicade or just live with a seton, as all my fistula issues were very little compared to what I have to deal with now.

Hi exit4, wow, I'm sorry you've had to go through all of this. I understand the "holding the leakage" stuff

I hope you get some improvement in the future. I'm glad you're part of our community and I wish you all of the best.

*hugs*

Oh, I hate that pressure feeling. I get that often, and it is sooo uncomfortable. As far as the spasms, have you tried an antispasmodic to see if it would help?

Thanks for sharing your story and advice.