Perianal fistula complications

Hi,

I was diagnosed about a year and a half ago with a perianal abscess and subsequently a complex perianal fistula. Before the abscess developed, I had been experiencing constant pain in my left buttock and perianal area, especially within the last 3-4 years. At the time, the doctors I saw attributed the pain to hemmerhoids.

Earlier this year, I began to develop pain and swelling in the external genital area, on the same side as my perianal fistula. I mentioned the problem to my colorectal surgeon who wasn't sure what it was. I also told my gastroenterologist at the time who recommended that I see a gynecologist. The examination showed everything was normal internally, with no sign of a rectovaginal fistula.

A few months later, I had fistula surgery in which the colorectal surgeon placed a seton (don't know if it was a cutting or draining seton). Because the fistula was deep, the surgeon was able to repair just half of it. At my follow-up appointment, the surgeon told me I could finish the fistula surgery or keep the seton in place indefinitely. I asked the surgeon if the genital pain and swelling would go away following the surgery, The surgeon still wasn't sure if these complications were related to the fistula.

In the meantime, I made an appointment to see my primary care physician about the problem. She was concerned and contacted my new gastroenterlogist about it. On his advice, I made an appointment to see a colorectal surgeron who is familiar with perianal Crohn's disease. The surgeon ordered a pelvic MRI and the results showed what seemed to be "healing sinus tracts" in the labial areas. When I followed up with my gastroenterlogist, he suggested that it could be 90% perianal Crohn's disease. He described the possibility of the fistula moving into the genital area. He also said the condition is rare, with less than 5% of people having this problem. After he reviewed the MRI results with the radiologists (who agreed there was genital involvement) and other doctors, however, he called me to say that they had no firm diagnosis. My gastroenterologist gave me the option of starting an anti-inflammatory medication like Humira to see if it would help the condition, or to see another specialist. I feel that I should get a diagnosis first before starting treatment.

I'm wondering if there are members who have experienced similar symptoms and what they did for diagnosis and treatment. Thank you so very much for your advice!

My first gastroenterologist thought my symptoms (before I began having complications) were consistent with perianal Crohn's disease. She had me do a colonoscopy which was normal. I took additional tests (celiac, etc.) which were negative, however, the Prometheus IBD test came back positive for Crohn's disease.

She referred me to a Crohn's specialist at another hospital where they did a small bowel MRI which was normal. I also had an MRI of the fistula which showed that it was complex. I also went to another surgeon for a second opinion who was concerned about the genital symptoms that were beginning around that time. She thought from looking at the MRI that it was either a transsphincteric or suprasphincteric fistula. The specialist mentioned in his notes that if it was a complex fistula that Crohn's disease should be considered.

Thanks for your help!

I had two massive rectal fistulas y setons installed in 2007 when I was diagnosed with CD in the colon.  I change my diet to the SCD diet and in 6 months both fistulas were healed so much, the surgeon had to remove the setons so they could heal completely.  The only drug I took was pentassa.  That was 7 years ago and I still follow the SCD diet and I have not had one symptom from my CD or problems with fistulas.  Read the book "breaking the vicious cycle" . This diet doesn't work for everyone, but what do you have to lose by trying. 

Hi I'm Joy47,

I have Crohns. I also have fistulas..yuk :( I started getting it about 20 years ago they came a couple times and then they went away for a long time like maybe 10 years. Then all of a sudden I started getting them all the time at first on my left buttock. It was deep and I wasn't sure if it was a fistula or not. Well it was I had to have it drainied and packed until it fully healed. One other time I had to have it drained but it wasn't deep. My doctor was waiting for Humira cause I could'nt get Remacaid. We were just waiting for the FDA. I was having those at least twice a week for such a long time. I would do the sit bath alot it really really helped. Then Humira was approved it took 6 months to a year and I don't have them hardly at all now. I never believed it would work. My Quality of life is much better than it was. I hope this was a little helpful. I didn't have any side effects...Yea!! You are absolutely right about finding what the actuall problem is, if your fistula lets you. Time is what its all about. Good luck to you!!