I was going to share my son’s story here awhile back and can’t remember if I did or not. So here it is again. I felt the need to share after reading some of the new entries.
I was doing laundry one day a couple years ago and noticed my son’s underwear had some blood and strange colored fluid on them. I asked him about it and what he said sounded like hemorrhoids to me so we didn’t do anything right away, but I told him to let me know if it felt like it was getting worse. Finally a few weeks later he was out shoveling snow and came in and said it hurt pretty bad. We went to his pediatrician who after going behind the curtain with him said “Oh my God!” Not what a mother wants to hear. She showed this thing to me and I was mortified. I couldn’t believe what I saw. It was a huge hole/sore looking thing that I should have noticed.
But really what 14 year old boy says “Mom look at my butt crack!!” She had me clean it and him on antibiotics until we could get in to see another doctor about it. She was baffled and had no idea what it was. We saw the doc who diagnosed it and scheduled the surgery for that summer as soon as school was out since its an 8 week healing window. Until the surgery I had to clean it everyday to make sure the infection didn’t come back. He went in in June of 2010 and this doctor cleaned it out and sewed him up. Right on schedule 8 weeks later ofter the stitches were out and he was supposed to be all healed we found more of the dang things. He sent us on to a specialist in Peoria. The plan was a quick little cut, clean, go home surgery was the plan but that all changed once he got started. He showed me a picture of this monstrosity.
He said in his 32 years of treating these things it was the biggest he had ever seen. You could literally put a Twinkie in there. (Gross I know, but that’s what he compared it to.) He said he was not surprised the first doctor had missed as much as he did because of a small flap of skin on the inside that even he almost missed. He thought it best that we did the open wound healing. The first few days a home health nurse came in and changed the packing. They showed me how to do it and now only come every other week to check up. We go to the doctor once a month to check in. At first he healed insanely fast. The doctor was quite impressed. But along the way we have seen small ones pop up above and below the original one. They have all healed completely. Its just the big one we are still fighting with 2 years later.
We had talked to a plastic surgeon way back at the beginning, but decided against that route at the time. Some days I wish we would have done it. Needless to say, me and my now 16 year old son get really tired of our morning routine which is me unpacking, him taking a shower then me repacking the hole that is still there. It has gotten down to the size of a pencil eraser. Unfortunately the problem is that the outside hole gets so small I can’t get the packing inside but there is still a small hole inside so the doc has to cut him back open a bit so I can get in there. Its quite frustrating when he has to do that. Its like going backwards, but like he has told us and I clearly see every time, “A ditch heals quicker than a cave”. Its a long painful process, but whatever it takes to get rid of this we’re willing to do.
The doctor is so proud of our progress and keeping on track he has asked if he can share our story and contact info with other teens who are going through this in case they want someone to talk to or ask questions about their own experience. Luckily we are able to go through this together with good attitudes and a slightly twisted sense of humor. We often make jokes about it during the packing process to take our minds off of the fact that its taking so long. I’ve snapped on the gloves and said “I’m going in” to which he replied “If you’re not out in 10 minutes I’ll call for back up” He calls the machine the doc uses to re-cut the “Butt-Burner 3000”.
The last time he had to cut my son takes a deep breath and says “Ahhh the smell of burning flesh in the morning!” (I told ya…twisted haha) Hopefully this will all be over soon. He desperately wants to go swimming. Its really the only activity he hasn’t been able to do since this all started so at least in that sense he is able to have a “normal” teenage life. He says it doesn’t hurt much. Although I have noticed lately he jumps some days while I’m packing so I think some of the nerves are finally growing back which I’m taking as encouraging!!