Surgery to remove tissue caused a fistula

Susan from Atlanta -

Hi everyone. I am new to this group. I'm still trying to figure out how it works. But, here's my story. Before that, I just want to say that I am totally amazed how many people have gone through the same thing or very similar things as I have been through. I thought I was the only one to go through this until I found several websites. I wish you all well and a speedy recovery! Here's my story.......

Sept. 2000, I had 2 sebaceous cysts removed off my tailbone. Healed within 5 weeks.

Sept. 2002, Started experiencing throbbing pains in my tailbone. Automatically assumed that I had another cyst. Went to the doctor and they injected cortisone in the area. The pain went away for about a week. Then the same excruciating pain came back. Went to the doctor again and he sent me to a General Surgeon that decided to go ahead and do surgery.

Surgery was done Nov. 27, 2002. I came out of surgery and I was told by the nurse that the doctor removed the pilonidal cyst. The doctor told my family that he only removed a large piece of tissue and didn't see a cyst. What he failed to tell me was the huge hole he left in me when he was finished. Nonetheless, the surgery was a breeze for the first day after surgery. I had steri-strips over the incision. I was instructed to leave the strips alone and they would come off in 3-4 days. By the time I got home, they were saturated in blood and they came off. My incision immediately popped open. I called the doctor and he said not to worry about it. Well, every time I sat down, my incision would blow air out and when I would sit, it would suck air in. I went to my post-op appointment, and the doctor decided to put stitches in my incision. He told me it would just have to heal. In the meantime, my pain is growing more and more intense. I was told I needed to go to the pain clinic. Well, the next week the sutures were removed and my incision popped right back open. The doctor said it would just have to heal from the inside out. After about a month, I became angry with my doctor because this air sucking and blowing was driving me crazy along with the pain. And, the doctor did absolutely nothing.

I went to an orthopedic doctor thinking my tailbone was all out of wack! One x-ray showed the next problem I had to attack. I had a huge tunnel going from the opening of my incision all the way through my colon. I was immediately sent to a Colon and Rectal Surgeon. I was diagnosed with a fistula [an abnormal pathway developing between adjoining organs or tissues, or leading to the exterior of the body] and was told it would never ever heal without opening the tunnel and letting it heal from the inside out. Surgery was scheduled for New Year's Eve. Surgery lasted for about 1-1/2 hours. The fistula was opened from the previous incision all the way down around the rectum. The fistula actually went through the sphincter muscle. So, they were unable to do anything about that except put a C-Ton clamp in and tighten it every so often (TALK ABOUT PAIN, PAIN, PAIN) It hurt to put pressure on my toes, much less lift my legs to walk. You don't realize how much you use those muscles until someone starts tampering with them.

Anyways, to make a very long story, a little shorter… My fistula was about 6-7 inches long and about 5 inches deep. To this date, 5 months later, it is not completely healed. I went to the doctor yesterday, and I have another fistula. In addition, I found out that I have to have surgery again and they are doing some kind of flap surgery which will require a 3-5 day hospital stay, which will take place in about 3-4 weeks.

The reason for the fistula is the cyst on the end of my tailbone ended up with a staph infection that just remained dormant and localized. When it decided to grow out, it destroyed all the surrounding tissue and just kept going and going.

Just wanted to share my story. I'm glad I don't feel alone anymore. The doctor tells me that hopefully this flap surgery will cure my tailbone pain (hopefully). Otherwise, I will have to have my tailbone removed.

Thanks for reading. Take care and I will keep everyone posted.

Susan from Atlanta

Updated 2003-05-18

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