My heart goes out to all who have experienced and are currently experiencing this terrible disease. I feel like God is leading me to finally share my story, and I hope it will bring you comfort, inspiration, and hope.
I have had 4 surgeries. My first was in 12/2010. I was lucky that a dermatologist I was seeing happened to diagnose it around the time he diagnosed me with hidradenitis suppurativa. I went to a general surgeon in Birmingham, AL, and had it operated on. I healed up perfectly and used Nair cream every few weeks to keep hair away, and was able to resume a normal life again, almost forgetting anything ever happened.
Then in late 2012, it came back. I had surgery in 2/2013 with a new general surgeon (my old one retired). I began driving and attending class again after the stitches came out in 2 weeks, but after about a week, I noticed some slight drainage. After about another week, while having a BM (and only slightly straining), a good bit of blood poured into the toilet. And so began a cycle of feeling better/pressure building up/draining blood during BM.
My surgeon tried silver nitrate every week or two, but it was just not going to heal. I had my third surgery in 7/2013. Luckily, I had just graduated and was able to just lay around at home, which was good because he left the stitches in for a full month this time, something that I felt a bit uneasy about. Well, I’d say within a month after having the stitches out, more tiny holes appeared in the scar and slowly drained. Relocating during the hot summer to Mississippi for a job probably did not help the situation either, with the heavy lifting and the sweating. But nevertheless, I was starting to get quite depressed. I had sacrificed a whole MONTH lying around, always taking care to be very clean and not constipated.
I began to wonder, what was I doing wrong, and was it ever going to heal, or would I have to have surgery every few months? I would ask God, “Why me”. But then something hit me. I am alive. I have a wife and family who love and support me. After each of these surgeries, they take care of me, bringing back food from restaurants, driving me where I need to go, picking things up off the floor when I drop them, spending time with me watching movies. Should I not be thankful, in spite of this recurrent nightmare of a disease, that things are not as bad as they could be?
Even watching people roll by in wheelchairs makes me thankful. Okay, well maybe they can sit while I can’t, but I can walk up stairs and do many things that I take for granted. Is my condition so terrible that I should forget every way in which I am blessed? This is the glimmer of hope that I wish each of us can experience in spite of this disease. Let us be thankful for what we have. Let us be thankful for the weeks after each surgery (however few they might be) when we do not have a pilonidal cyst. Let us be thankful for the good days.
Even though it is easy to live in fear each day of the seemingly inevitable return of the nightmare, let us enjoy each day that God gives us on this earth. We all worry that it might come back, and indeed it might. Well, let me tell you a secret. It’s almost a relief when it DOES come back, because once it’s back, you no longer have to worry about it coming back anymore, because it already has. You can accept it, calmly start thinking about the next steps, and continue to enjoy those aspects of life that you can still enjoy.
Well, back to my story, I wasted no time in seeking out a new surgeon in my new city. I visited a general surgeon who recommended going to a wound clinic (because it couldn’t have come back so quickly). The wound clinic nurse I would see was always extremely helpful. They had me try Stimulen powder, an expensive collagen-like powder which is supposed to promote healing of the skin. My loving wife would stuff some of the powder in the holes, she would stuff some kind of strips containing silver in the holes to keep the area clean, and she would even stuff some kind of gauze made out of seaweed in there – all of which were recommended and given to me (or ordered for me) by the nurse.
Needless to say, I probably tried all there is out there. But zero improvement. I just had a very well-pampered pilonidal hole. The folks at wound care suggested a certain plastic surgeon who often worked there. I saw him a few times, and finally he recommended surgery. The way he talked sounded like PLASTIC SURGEONS ARE THE WAY TO GO. He described a fairly complicated procedure, where he would carve up my left butt cheek and shift everything toward the middle to put most of the tension in the skin AWAY from the crack; he also wanted to put in a JP (Jackson-Pratt) drain to try to pull fluids out of the dead spaces so as to reduce chances of infection and recurrence.
Well, he did this very thing in 12/2013, for my fourth surgery, right after Christmas. I stayed in the hospital overnight for the first time, since it was a much more substantial surgery this time. I was able to lay around at home for a couple weeks, dragging my JP drain around me for about 10 days and emptying it each day. I was almost sad to see it go; it had become something of a pet. My wife took care of me and fetched us food. We would clean the wound every day with a saline solution and coated it with Bactroban.
I got the stitches taken out after 2 weeks, and actually began to heal and feel better. About a month after the stitches were removed, I began laser hair removal treatments in my crack area, since I have heard this almost perfectly correlates to no more recurrence. I was quite nervous about having this done in that area because it’s somewhat painful (like rubber bands snapping you with each click of the laser).
Now, four months after surgery, having had three laser hair removal appointments and a few follow-up visits with the surgeon, I seem to finally be healed. I can sit and lay on my back again, better than I have been able to in over a year. My family and I have prayed for so long that God would bring healing, and I believe with the help of Dr. Reno of Hattiesburg, MS, the worst might finally be behind me (no longer literally)! I still ask myself why I have had to go through all this, and my best answer is that God wants to use my story to help others in similar circumstances.
I pray that my story brings you hope and inspiration. Remember that you are loved and not to take that for granted. People who love you want to help. Accept that help and love them for it. Pursue God in spite of your condition, trust in Him, and be thankful and content with life. Pray that He will heal you and use your story for His glory. This is my daily prayer. May God bless and heal you.