New to this forum but not to pilonidal abscesses

Esme Squalor

New Member
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Hello,

I have been having pilonidal abscesses for thirty years. I first started suffering from them when I was put on methotrexate after being diagnosed with psoriatic arthritis. I had them every couple of years, and I also had two unsuccessful excisions. Around 2000 things got quite bad and I ended up having two abscesses within a couple of months of each other. I then had a massive excision which seemed to do the trick for 14 years. By this time I had also come off methotrexate and was on an anti-TNF drug, another immunosuppressant, for my arthritis. In 2014 I was diagnosed with stage four ovarian cancer. I received chemotherapy and remarkably went in to remission, but I had to come off of the anti-TNF and put on oral steroids. Then in August of 2015 I felt a lump just underneath my coccyx. The pilonidal abscess had moved to a new area. I had it drained and had daily packing with aquacel. But in the middle of September the old site of the abscesses, where the skin was very thin after many surgeries, opened up. Then another hole in my skin opened up just underneath it and they joined up. At one point the hole was 5cms deep and 5cms wide. It stayed that size for several months and I was referred to many surgeons, who felt that due to my inability to come off steroids there was little to be done about the hole as any surgery wouldn't heal. After a consultation with a anesthetist who specialised in pain management, I came off morphine as that is also an immunosuppreressant. The hole did become smaller and is now 1cm wide but varies between 3-4cms deep. The abscess just under my coccyx is still active and in the past 18 months had flared up, burst on its own, and healed six times. I am now out of remission, although my cancer is not causing me any physical discomfort at the moment, and my oncologist has expressed reluctance about my starting chemotherapy while I have this problem with the abscesses. But they show no sign of healing and it has been 18 months. As the cancer has returned, I have started back on the anti-TNF, so I can wean myself off steroids. But it's just not happening. My arthritis flares up as soon as the steroid dose gets too low. I am at a loss about what to do. I am being monitored by the Plastic Surgery Dept at St Thomas' in London who want to perform a Limberg flap once the present hole has closed. But I don't know if it ever will. Have there ever been cases of a pilonidal abscess never healing?
 

diseasedone

New Member
Country flag
Hello,

I have been having pilonidal abscesses for thirty years. I first started suffering from them when I was put on methotrexate after being diagnosed with psoriatic arthritis. I had them every couple of years, and I also had two unsuccessful excisions. Around 2000 things got quite bad and I ended up having two abscesses within a couple of months of each other. I then had a massive excision which seemed to do the trick for 14 years. By this time I had also come off methotrexate and was on an anti-TNF drug, another immunosuppressant, for my arthritis. In 2014 I was diagnosed with stage four ovarian cancer. I received chemotherapy and remarkably went in to remission, but I had to come off of the anti-TNF and put on oral steroids. Then in August of 2015 I felt a lump just underneath my coccyx. The pilonidal abscess had moved to a new area. I had it drained and had daily packing with aquacel. But in the middle of September the old site of the abscesses, where the skin was very thin after many surgeries, opened up. Then another hole in my skin opened up just underneath it and they joined up. At one point the hole was 5cms deep and 5cms wide. It stayed that size for several months and I was referred to many surgeons, who felt that due to my inability to come off steroids there was little to be done about the hole as any surgery wouldn't heal. After a consultation with a anesthetist who specialised in pain management, I came off morphine as that is also an immunosuppreressant. The hole did become smaller and is now 1cm wide but varies between 3-4cms deep. The abscess just under my coccyx is still active and in the past 18 months had flared up, burst on its own, and healed six times. I am now out of remission, although my cancer is not causing me any physical discomfort at the moment, and my oncologist has expressed reluctance about my starting chemotherapy while I have this problem with the abscesses. But they show no sign of healing and it has been 18 months. As the cancer has returned, I have started back on the anti-TNF, so I can wean myself off steroids. But it's just not happening. My arthritis flares up as soon as the steroid dose gets too low. I am at a loss about what to do. I am being monitored by the Plastic Surgery Dept at St Thomas' in London who want to perform a Limberg flap once the present hole has closed. But I don't know if it ever will. Have there ever been cases of a pilonidal abscess never healing?
How are you doing? I know this is an old post. You have been through so much.
 
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