Australian Pilonidal / Bascom Cleft Lift Experience

Hi guys! I have been reading these forums for quite a while now and thought I would add in details of my journey with the dreaded pilonidal disease!

I am 22 year old Australian girl and have been battling with this condition for just over 2.5 years. I developed my first symptoms in January of 2010 (just before starting my final year of university - great timing!). At this time I also had Glandular Fever so was recommended to wait for my immune system to become stronger prior to having surgery. I also had to wait for the university mid-year break so that I could have a decent amount of time off at home to recover.

In July 2010, I underwent an open excision surgery with a local colo-rectal surgeon. I was told that the wound would take approximately 2 months to completely heal post surgery, as it was healing from the inside out. I was also told by a general practitioner doctor that I could expect "flare ups" for approximately 2 years post this style of surgery. I was seeing my surgeon for follow ups fairly frequently, where he would cauterize the margins of the wound to "promote healing". After each of these sessions, the wound would weap and become extremely uncomfortable. Needless to say, the wound never completely healed. I would, every couple of months, get a large flare up and would be taking more antibiotics! I was still told, though, that this was fairly normal - so I did not become too alarmed at this stage!

In May 2011, I had quite a large flare up. I was to go on a big trip to Europe a month later and this freaked me out...a LOT! Luckily, by the time I went to travel, the flare up had settled down and thankfully I made it through my holiday with no real dramas!!

Everything, though, unfortunately reared it's ugly head on Christmas Day 2011. I developed a MASSIVE boil, almost the size of an egg, on my natal cleft. I could barely move without being in total agony. Just my luck that it happened on a public holiday when nothing was open!!! Having been through the whole rigmarole before, I knew that the best way to promote drainage was to have hot baths and put heat packs over the area. Thankfully, after about 10 showers/salt baths and heat packs the boil started to drain which drastically reduced the pressure and pain to the area. My family and I believe that if this had not happened, I would have been in hospital with IV antibiotics and a likely excision. I, of course, went to my GP when able and started on more antibiotics.

Shortly after this period, I noticed that some other physiological changes were happening. I had become excessively fatigued, had gained 10kg in a very short period of time despite a healthy diet and had had a lot of emotional changes such as reduced motivation and positive emotions. I went to a doctor to see what the problem may be. I was tested for thyroid deficiencies and hormonal changes. My cortisol hormone levels came back as double what they should be (normal range around 200-700 and mine were about 1300!), which is the hormone for stress. After ruling out Cushing's Syndrome through an MRI, urine test and ultrasound, the conclusion was made that I had much increased stress hormone level (causing all the physiological changes) due to a chronic infection ... THANK YOU PILONIDAL SINUS!!

I had booked an appointment with my surgeon again to get his opinion. I had succumbed to the fact that I would have to have another operation of some variety. He told me that I would need a Bascom Cleft Lift procedure, which all sounded very good and of course, this forum helped me in understanding how positive the results have been for others! My sinus was draining non-stop for over 2 months prior to the surgery.

I went into theatre on Friday June 1, 2012 for the Bascom Cleft Lift Procedure. I had been told I would need to be in hospital for 4 days (over the weekend). I ended up being in hospital for 6 days. I had a drain in place, which was removed around 4-5 days post-surgery. I was told everything was looking good and was discharged on the Wednesday. Unfortunately my IV cannula tissued on the first night, so I was commenced on oral antibiotics almost immediately. This proved to be a very bad decision - for someone with a chronic infection with potential antibiotic resistance!!

I was at home from Wednesday afternoon and felt like I had a major flu from Thursday, feeling extremely lethargic, malaise and had awful stomach pain. I had put this down to having had so many drugs. By Saturday, the area where the drain had been removed had swollen up like crazy and was extremely tender to touch - I thought this was because I had been lying on that side for a week. My Mum (who had been dressing the wound for me at home, and who is also a nurse) looked at the area and called my surgeon at midday to get his opinion. I was rushed straight back to hospital and within four hours was back on the table having myself opened up again!! When I arrived at hospital, the nurses attempted to squeeze the area, which was unsuccessful and also extremely painful! I then received a morphine injection in my backside to ease the pain. I was in agony and very very sick. Mum said that she was afraid that I was septic and wouldn't emerge from the surgery alive.

I ended up being in hospital for 7 days after this second operation. They washed out the infection site and had inserted a small open drain (which was to remain insitu for ~ 3 days). Thankfully, the medical team took swabs of the area and gained blood cultures to determine what antibiotics would work for the infection. I was also appointed a physician to assist with this. I was terrified that I may have MRSA, as I work in a hospital and could have easily acquired this from one of my own patients! Luckily, this came back clear. I ended up being on IV antibiotics for around 5 days.

On the Tuesday, the nurse unit managed (NUM) and my surgeon decided that a vacuum assisted closure dressing/drain would be appropriate to use over the washed out area as the cavity was approximately 20cm long and 7cm wide under the skin. Basically, this involves having the wound packed with gauze and a vacuum attached which pumps blood/other fluids out of the wound and apparently promotes healing. I was initially told that this would be on for 2 weeks... 2 weeks came and then I was told it would be on for a total of 4 weeks. This really upset me because the VAC drain is quite painful. The wound has a very long tubing coming out of it with a machine attached which needs to be plugged in to operate (I call it my tail ). I've had it on for just under 3 weeks at this point - still have just over a week of it left and I REALLY can't wait to have it gone!! The packing/re-packing of the wound is AWFUL! I need to take strong morphine derived painkillers prior to this process and have to have this done 2 x a week. It has reduced my mobility a lot and instead of taking 2 weeks off work, I have had to take 6 off as I cannot sit/walk too far and I have this machine attached to me 24 hours a day.

The stitches from my original Bascom Cleft Lift have been removed and the original job does look really good and is really clean. I do, though, have this massive gaping hole at the base of one of my butt cheeks (courtesy of the infection/wash out procedure). The NUM packing my wound twice weekly has said that the wound is very clean and has just over half closed since using the VAC drain, which is good news!!

I have another 2 weeks before I go back to work - with another week of having this VAC drain in. After that is removed, I will have to pack the wound myself and use a seaweed style dressing.

I hope that this awful disabling condition will be well and truly gone once this wound has healed and that I can start living the normal life of a 22 year old girl again (despite a pretty funky looking butt!)!!

Sorry for the essay!!!

update - the nurse packing the wound ended up packing it with the wrong stuff and I ended up in hospital again with another infection caused by tunneling. They opened up the wound again and have now packed it with a foam (for the vac dressing) and am off work AGAIN for another 5 weeks

It sounds like you've been through quite an ordeal! I feel like I've been a major sissypants after hearing this I've had a chronic wound going on now &
i'm for about 4 months post op. I originally had an excision with 1 wound that was tunneling and another which is really deep in the natal cleft and later developed tunneling. Have faith in the wound vac/your tail ( i went to my Dr today and that's what he called mine too )! I just got a wound vac put on a little over a week ago and it's speeding up my healing drastically.

I'm also a female around your age, so I understand the frustrations of dealing with it during college & wanting to get back to a normal life! It's super frustrating, especially when you're eating right/doing all the right things but we'll get through it and will hopefully never have to deal with it ever again!

It really has been an ordeal!!

How long did you have yours for prior to having your most recent surgery??? It's just such an awful thing to live with - I feel awful for you

How are you finding the vac dressing?? Mine was sooo painful the first week or so that they put it on! It seems to be more manageable this time around and apparently the wound is healing well! Hopefully it can come off in a couple of weeks - making a grand total of almost 10 weeks of it on. Tails are not friends haha

Oh wow that sounds awful! Sounds like such an ordeal! Sorry to hear you had such a hard time with it.
The dr said after a week post op I can return to work for 4 hours max but my boss would rather me just have the week off and rest. It's all healing well and the 15cm drain hole is now getting changed every second day but still bleeding abit but that's ok.
I know it sounds dramatic but I feel like I'm always going to be freaking out it will come back.

Hope you are well and truly on the mend and recover quickly

I can't blame you - I get very anxious about mine coming back too!! Take as much time as you need - it's definitely worth it!!
Hope you're better soon

It really is Quite a pain in the butt haha. I've been dealing with mine for around 2 years now. I noticed in the summer of 2010 that I had some yellowy drainage going on back there. I ride horses & I had noticed the fluid after riding so I didn't think anything of it...I thought it was due to sweat and stuff mixing. Gradually the amount of fluid increased then around winter/spring 2011 it started bleeding. I don't want to get graphic but it'd go through cycles of having a lot of deep red blood...really scary! I assumed it was hemorrhoids and besides the fact that I was super embarrassed, I didn't tell my GP about it until a yearly visit around January 2012. She sent me to a colon/rectal surgeon and we scheduled excision surgery for my spring break, March 2012. What made mine tricky was the fact that the impact of horseback riding on that area so I ended up having 1 cyst/sinus that had two tracks-- the one healed up but now i'm still dealing with the other one, plus an additional cyst that hadn't burst (i don't know what you'd call it) above with tunneling.

For the wound vac I really haven't had any pain...discomfort when they're putting the foam in, definitely. The worst for me has been getting the sticky covering off, I have really sensitive skin...I've heard the vacs can be painful though, but it really varies person to person I think it also depends on what your doctor has the vac programmed to, i.e. pressure/intensity. What foam have they been using on yours? Maybe that's making a difference too

I do wonder if horseback riding's kindof amped up my pain tolerance back there or killed off some nerve endings ha. I rode with an open wound for well over a year before my surgery....that was bad of me but it's not exactly easy to tell someone that this is going on....

I'm glad to hear yours are getting easier & you're healing with the wound vac! It sounds like you're on the upswing of it all Tails are definitely not friends-- but as long as they speed up healing I think they're kind of okay, i guess...

Ahh yeah, I have heard of a few people getting them after horse riding!! That sounds really complicated with the multiple tracts! What are they planning on doing with the extra cysts??

That's great that you haven't had any pain with the vac! I first had packing with gauze (over a really really deep hole/tunnel of about 15-20cm), which felt like I was being stung by wasps constantly!! Since packing it with the foam (it's a black foam - unsure of what type it is exactly), I haven't had much pain at all, except when they rip the sticky stuff off, like you! Coz I've had mine on for about 6-7 weeks so far, the skin under the dressing is red raw - it's soooooo itchy I just want to scratch it haha. They've ramped my vac pressure up to 120mmHg - what is yours on??

That's crazy that you continued horse riding! I understand what you mean about being embarrassed about telling people though!

I'll be looking forward to having my tail docked in a couple of weeks

Yeahh, supposedly all the friction from the riding clothes plays a role. Apparently my dad had one too but didn't tell me until after the fact (thanks alot) he hasn't had anymore trouble with his so I'm keeping my fingers crossed I'll follow in his footsteps.

My surgeon had found it in my prior surgery...I believe he did multiple excisions on each one instead of one big cut so it'd heal faster. Even though I'm not healing as fast as i'm supposed to, I'm glad he did it that way....I'd imagine this would be much more complex if it were one big excision.

Oh my yours was so deep! No wonder you had so much pain! I'm using the white foam (black foam was too big) but it seems to be doing its job. It's funny how the foam's more comfortable to pack in there then the gauze! I was so afraid my vac was going to hurt...my wound doctor told me before i got it to take a vicodin before the changings and the worst case scenario was running through my head.

Aww i can't even imagine! I've had mine for a little over a week, I'm already getting blisters but 6 weeks, no wonder why it's all raw At least after all this is over we'll be able to get bikini waxes without flinching

Mines at 125mmHg. I think because it's not so deep now they can get away with it being a higher pressure.

Yeah, I didn't really think riding with it through...it wasn't really painful, more of a dull sore-ness so I guess I thought it was okay. In retrospect I would've gotten this taken care of a while ago had a known.

Ahh, me too, I'm so ready to get off of my leash

Have your doctors talked to you about the next step after the vac? I saw you said something about a seaweed dressing or something in one of your posts

Yeah I had read somewhere that there is a genetic link - I think my uncle had had one when he was younger too. Apparently, also, people tend to "grow out" of them around the age of 25, when all of the hormones start calming down...I thought that was interesting.

That's crazy that you had a few small incisions! I can see what you mean though, rather than opening up a huge hole!

Yeah I take a couple of endone tablets prior to dressing changes, they seem to do the trick pretty well (other than the ripping of skin thing). Bikini waxes will be easy peasy haha

Well they were planning on doing the seaweed dressing after the first round of the vac, but apparently they don't work very well at all! I have a feeling I'll just have to put a pad over it for a little while once this comes off, coz it won't be a burrowed hole (it's all open now)...so hopefully that should be easier than trying to pack it myself!! What have they got planned for you?

I heard that too, about the genetic link, but I didn't know we could "grow out" of them. I love the sound of that! I read that flareups tend to correlate with womens' monthly cycles so it totally makes sense that that would happen.

Ohh, well I'm glad you found out they don't work too well now, rather than after you tried it! Hopefully you don't have to do too much, packing it yourself would be quite challenging!
I'm not sure yet, they haven't said...I've read that wound vacs don't work too well once you get to the skin layers, so we'll probably do some sort of treatment...Prior to the wound vac we were using mesalt (gauze impregnated with salt..i'm not sure what the concentration is, but it's higher than normal saline) so we may use that or aquacel, which we were using before the mesalt. The aquacel looks kind of like felt but once its in the wound, the moisture turns it into a gel...pretty cool stuff.

I saw on here someone talking about Oasis, a wound matrix, and that looks pretty promising too. It's got a bunch of collagen and other good things for skin growth--i'd be interested in looking into that if my wound doctor is open to ideas....

I am willing myself to get to my mid twenties now haha! It's really random!

Ahh ok - I'll have to see what they want to use and keep you posted. That mesalt stuff sounds like what they were packing my wound with the first time with the vac. That felt stuff sounds heaps cool! Collagen also sounds good! It's really amazing what they can do with medicine these days

Do you work at the moment/study??

Haha i understand! Just to get past this whole thing!

I will definitely keep you posted too! Collagen is verrrry good. They actually make (obtain? manufacture?) collagen in little packets you can dump in also...it's super important for skin growth!
I've gotten so interested in wound healing because of this whole ordeal...it's really cool when you think about it!

I do have a part time job in retail. Fortunately it involves no sitting and I try to avoid bending over as much as possible. There's no way I would be working right now if I had a desk job! It's frustrating though because I just graduated from college and want to find a "real job" , but I can't do that until this whole thing is taken care of. How about you?

Yeah it sounds great - I'll have to ask them about it when they re-dress it! It is pretty fascinating!

That's lucky that you don't have to sit down too much! What did you do at college?
I graduated in 2010 - so have been working as a speech pathologist for a couple of years. I actually work in a hospital and thankfully they have been really great about having to have so much time off (considering it was supposed to be 2 weeks initially...now has turned into 12!)

Yeah, let me know what they say about it!

I got a bachelors degree in biology. I'm planning to go to grad school either in the spring or next fall, depending on how this all goes for my masters so I can get into animal research (probably animal behavior but i'm kind of on the fence still as to what exactly I want to do)

Speech pathology sounds pretty interesting! It's a good thing you work in a hospital, that makes it a little easier--I'm sure they understand!

I just had it changed again this morning and they're thinking that may be able to take it out permanently on Thursday or Monday next week (yayy for a week early!)

That sounds really interesting! I know a few people who have done similar things and have got into more equine specific streams too - they love it!!

Yeah I love speech pathology - really interesting work!

That's great news! I had mine measured on Monday both them were under 1cm, so it's looking my tail may come off tomorrow when i see the doctor
hooray progress!

Yayyyy!! I think I might be getting mine off tomorrow too - online drinking party!?

haha yes!!

I got mine off today! We're going to use aquacel until it all closes up & I have a follow up with the doctor in 2 weeks. So excited!

YIPPEEE! I just got mine off too!! Mine is being packed with bactigras and then a little bit of strip gauze, covered in a pad - feels soooo much better! I spent all night awake last night coz the stupid machine kept beeping, so I was well and truly ready to say goodbye this morning!!