Post Edited (MissCris) : 1/31/2009 10:45:04 PM (GMT-7)
Post Edited (MissCris) : 2/1/2009 9:31:03 AM (GMT-7)
My experience was similar. Here is my story. I went to the ER with a painful knot down there and drainage out the rectum and perineum (the area between the rectum and vagina). I had no clue what it was (I didn't know I had CD at that time). The ER doc said peri-rectal abscess -- go see a general surgeon. The general surgeon said Barth. gland cyst. which is an abscess. I said "but the abscess is on one side and the drainage hole in the perineum is on the other side. And what is this drainage out the rectum?" "Nope", he said, "I am a rock star and amazingly smart and know what I am doing. You have TWO infected Barth. gland cysts." (Well, he didn't exactly say that, but that was his attitude. If I wasn't so sick and out of it I would have gotten up and left. I should have trusted my instincts!!!!) I was very sick, and very inexperienced with health problems and said "well, doctors know best". He made two incisions and I got sicker and sicker. I finally went to an OBGYN and he said while Barth. gland cyst are fairly common, two at once is unheard of. "Your geneal surgeon is a quack" (That is a quote). He said he thougth something else was going on that was out of his "turf" -- out of his specialty. So he got me with a colo-rectal surgeon who said yes it is a peri-rectal abscess. He knows Crohn's and he took care of me -- cleaned out the abscess and installed the seton. And I got better!!
What I learned (my cautionary tale) is that doctors have areas they know (their "turf") and you better stay in it or you may regret it. When the general surgeon took a look he should have realized it was out of his turf. Barth glands are an OBGYN's turf. He should have referred me!!! He gave me two deep incisions I didn't need and ended up damaging the fistula. My OBGYN was smart to get the colo-rectal surgeon involved. The OBGYN said there is only a 2 - 3 inch difference between his turf and that of the colo-rectal doctors, so it is sometimes hard to tell what is going on. The damage the general surgeon did to the fistula is why I got additional abscesses -- if he knew anything about CD he would have known not to cut into a fistula (unless you are doing a fistulectomy). Surgery on CD folks is a specialty among specialists.
I am wondering if this is happening to you. Again. it is within the realm of possibility to have a barth gland form an abscess and fistula. But my doctors say it is much more likely to have a peri-rectal abscess off of the rectum with a fistula that empties out in the perineum. Everything is so close down there that they typically need to explore in the operating room to really determine what is really going on.
The fact that your doctor mentioned Crohns is a good sign. But it doesn't sound like she took care of the abscess. I'm not a doctor and obviously don't know the details of your situation, but my doctors (the good ones) say the effective way to deal with a CD abscess is to cut it open, clean it out, and let it heal from the inside out. I suggest you really need to talk to her about what she did and about the other pocket of stuff you are draining. Call her and describe what is going on. Unfortunately, fistulas can branch and you can have other abscesses off the main one (I had this happen). If she doesn't have CD experience, maybe she can get you an appointment with a colo-rectal surgeon who does. I strongly suggest you stay in the VA or University teaching hospital system for your surgeons. My bad general surgeon was in a private practice and they get paid by the procedure (so guess what they like to do? operate!). My good doctors are with a University hospital and are on salary (so they do care if they operate or not). This is my opinion - I'm sure there are ethical surgeons in private practice. I just got an bad one (bad doctor! bad!!).
Also, my bad doctor said I'd be able to go back to work in 3 days. What an idiot. I was able to tolerate sitting a couple minutes at a time only after 2 months. Now again, I had a massive infection (cellulitis) and his lovely incisions, so don't think my expereince is normal. My second abscess a year later was very deep, so the incision was pretty big. I went back to work two months later -- but I started working from home after a week and a half. Sitting was a challenge for several weeks, and I decided to stay off my feet to give the incisions the best chance to heal.
So that is my novel. I agree that it is very nice to be able to talk to people who have expereinced all this! This forum has been a real blessing to me.
Now go and take another sitz bath!