Recently diagnosed pilonidal awaiting surgery, unsure what to do

pacifickiwi

New Member
Hey all,

I'm 30/M from Auckland, New Zealand have been suffering from recently diagnosed pilonidal disease for two years now. Initially it was thought to be a fistula and my surgeon has done a couple of surgeries which have been unsuccessful. I have prevous history of Ulcerative Colitis which was "cured" in 2005 via a total collectomy and J-pouch which may have caused this initial asumption.

For the pilonidal issue, the first surgery was investigatory (Sept 2019) which ended up excision of the infected area and "laying it open". There wasn't any post-operation nurse support and the wound didn't fully heal. A second surgery was done recently (Aug 2020) where a larger area was removed and I was given post-op nurse support to pack the wound and help promote healing. This again was going well but after a few months has come to a stage where it has stopped healing and stuck, turning it to a chronic wound.

Going back to the surgeon in Dec 2020, they have now diagnosed it to be pilonidal disease and I am now on a waitlist to get another surgery done within the next few months. This will be either Karydakis, Rotational, or Bascom depending on surgeon preference.

Recently the wound area has been a little more tender and sore and seems to be draining more. Nurses say there is some hypergranulation. I feel like it may be some form of flare up. Pain wise its manageable mostly but quite annoying with a lot of maintenance to keep things clean etc but it's not infected. I've also been doing a bunch of net research to understand the disease itself and come upon the "Cleft Lift '' procedure which seems to be newer(?) and recommended on here and r/pilonidalcyst on Reddit.

Now I'm a little unsure on what I should be doing next, it doesn't seem my surgeon is aware of the cleft lift procedure (as it wasn't mentioned). Would it be better for me to wait and continue with whatever the surgeon does which seems to be on the right track as they are more specific pilonidal targeted surgery or should I look for private surgeons who may do a cleft lift in New Zealand? There seems to be one in Christchurch according to a list this forum, but wondering if anyone has experiences with surgeons in Auckland?

I just don't want to end up with another failed surgery as it's really frustrating and slowly starting to affect my mental wellbeing too :( especially the extra pain recently.

Any advice or recommendations would be sorely appreciated!
 
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