I am Jonathan’s mother. We have been dealing with this pilonidal stuff for about a year now, that we know of. We have no idea how long it was there before it was discovered. The poor kid had this smell about him for awhile to the point he would shower and half an hour later I would ask if he really got in the shower.
I started noticing bloody stains on his underwear and he would always say he’d had a big BM so we just figured hemorrhoids. He was 15 at the time so obviously neither one of us was eager to look. As the staining persisted I constantly told him to let me know if it hurt and we would go to the doctor. His pediatrician is a woman so he, of course never complained. We got a big snow last winter and after shoveling he came in and said “ok, I give up. It hurts.” We went in to see her. They were behind the curtain and I hear her say “Oh my God!” Obviously this scared the hell out of me. She showed it to me and it was the most disgusting thing I had ever seen. He had a huge hole in the middle of his butt crack. She had no idea what it was and of course her superior doctor was not in.
We rescheduled to come see her. She didnt know what it was either and referred us to a surgeon who was not pleased with the treatment the first doctors had us doing until we could get in to see him. We opted for the closed wound surgery. There was so much infection we had to put it off for awhile and since there was an 8 week healing time we decided to do it as soon as school was out. The surgery went well, we thought. He healed pretty quick at first. The stitches were removed and he said all looked good he’s clear to go to school and resume normal activity.
A couple weeks later we noticed the smell and drainage again. We went back and it had returned. He referred us to a specialist. This one said it was deep but should be pretty routine. He was wrong. When Jonathan went in for surgery his name had barely hit the board as being in surgery, then he showed up as closing. I knew it was supposed to be quick but wow! This surgeon has been removing these things for 32 years. He came out and told me this was the largest pilonidal he had ever seen! As he put it, you could fit a Twinkie in this thing! Needless to say I will never eat a Twinkie again. He told me not to worry we were going to get this thing. He wanted to bring in a plastic surgeon to do some reconstruction and some kind of flap thing. This time we’re doing the open wound healing. I am not a nurse nor have I ever had to do any kind of would care.
After a couple weeks of packing the wound daily we went back to see the surgeon and the plastics guy, they came up with a plan, but the plastics guy was just getting ready to go on vacation and didn’t want to “cut and run” which I appreciated so we decided to wait until he came back. In the mean time I continued with the daily packing. We went back to see the surgeon shortly before the plastics guy came back because I was really concerned about what was coming out of this thing. The color and consistency had changed a lot and I was scared it was infected. The surgeon was amazed by what he saw. The hole had shrunk by over half. He said it looked awesome and even canceled the next surgery. The stuff I was seeing was exactly what should be coming out. He showed me a picture of the wound immediately following surgery. It was scary, but impressive to compare the two.
We’re still doing the daily packing and it is continuing to heal nicely. Unfortunately another one started to form just below the original, but he caught it soon enough he was able to lance and clean it right there in the office. So now we’re packing two of these things. This week the doc has also added me using silver nitrate sticks on it once a week. That was an interesting experience. It has been a long year and we are both eager to get it over with.
Thankfully Jonathan is a good, strong, healthy kid and luckily has a great sense of humor that he got from me haha. It has been awkward to say the least. But we make the best of it and joke around a lot to keep it less weird. I feel for anyone who is going through this and hope everyone can find an awesome doctor like we have! He also has a rather odd sense of humor so that helps ease the tension of the whole thing. After the initial shock of what’s going on back there has passed I would encourage anyone who is dealing with this to find someone to talk to about it. It is so common its unreal. I had never heard of it until this happened to him. Doc said its nothing for him to see 5 or 6 of these a day.
Also as friends and family members are finding out what he’s going through they are telling us about people they know or themselves going through it. So stay positive!! There can be a light at the end of the tunnel!! It just takes time and patience to get there.