My Pilonidal Experience

#1
Just to clarify - I am posting this thread to inform, reassure and advise (if I can help). I have been suffering with a pilonidal sinus for a LONG time and therefore become quite educated in the area, however this should only be taken as advice as I am not a Practice Nurse, GP, Tissue Viability Nurse or Consultant. I will give a quick narrative in chronological order of my experience and hopefully this will raise some questions/help to reassure that you're not the only one suffering with this debilitating (slightly trivial) condition.


Circa 2008


It all started when I was 15/16 I used to feel a small spot at the top of my natal cleft, I was concerned for a while. Nonetheless the teenage attitude meant I did not go to the GP or anything and just got on with it. I was also playing a lot of sport at the time so just put it down to a rugby/football/cricket injury. There was little/no pain so I just left it and hoped it would go away.


September 2014


Myself and a group of friends were going on holiday to Ibiza. After a long night in a club I came back to the apartment to discover my boxers were covered in blood. Not a huge amount but enough to cause concern. On the holiday every time I went to the toilet there would be blood on the toilet seat. I assumed I had some sort of sore or cut in the natal cleft area. When I returned home I asked my girlfriend and father to have a look. They both saw a small hole in the natal cleft. I obviously Googled the symptom and quickly discovered “Pilonidal Sinus”. I made an appointment with my GP and he confirmed it. He also said at this point he would advise not doing anything as the surgery is unreliable and can make things worse. I took his word for it and carried on as normal.


May 2016


I was in my final year of university at this point. When I would sit for a long period of time I would endure some pain and there again would also be blood/discharge in my boxers. It was getting annoying at this point so I went to see my GP again. He had the same attitude and reluctantly referred me to a specialist.


June/July 2016


This was my first meeting with the colorectal surgeon and I knew straight away he knew what he was doing. I had complete trust in his knowledge and ability. He looked at the PS for all of 20 seconds and knew he had to operate. No choice was given. He said “it will get a lot worse if we do not do anything”.


September 2016


It was the morning of my surgery and I was optimistic, the PS had not been playing up and there were very few flare ups from the consultation to the day of surgery. The surgery went well however the consultant said he was forced to remove a large amount of tissue approx. 11cm x 4cm x 2cm, I was stitched up and sent on my way. He performed primary excision and closure.


The pain following the surgery was tolerable, I had very little discharge and the stitches were removed two weeks later. Again it felt really good to have the stitches removed. However a couple days following the removal of the stitches the wound began to break down.


The following 3 months from September to December were difficult, it was a mix of daily dressings, antibiotics and a few trips to see the surgeon. There was a large amount of discharge coming from the wound, a mix of blood and serous fluid. The whole time I was convinced that it would not heal. I was reassured the wound would heal and it was all part of the process. Tissue viability nurses saw me and they also reassured me it is not the worst case they have seen and they thought it would heal completely.


I requested an MRI and the surgeon reluctantly allowed it. The reason behind the healing of the wound was a combination of antibiotics and aquacel with a 3M tegederm dressing over the top (that stuff it brilliant). I was started on sorbsan ribbon with a Smyth and Nephew sacrum dressing over the top. Due to the discharge this was not effective. I would stress you research and try different dressings and see what works for you.


January 2017


The wound had healed considerably by now and I was convinced I was over the worst. I met with the surgeon and he said the he was happy with the MRI and was happy with how the wound had healed. He told me to get laser hair removal as this would stop any recurrences and I was on my way.


May 2017


The months that passed were strange – the pain/discomfort never left, the wound became gunky and it would bleed. I went to my practice and they gave me antibiotics (again). I finally knew this wasn’t right so I called my consultant’s secretary and she got me an appointment to see the surgeon the following week.


This appointment was completely different after all the consultations before where he was convinced the wound was healed/healing after a lengthy examination. This time, he looked at it for 10 seconds and knew something was not right. He left the room and came back with a diagram of what he was going to do. He said is going to perform the ‘Bascom Cleft Lift’. I was happy because I knew this was the best surgical option.


I am now awaiting surgery number 2…..


Please feel free to ask ANY questions.
 
#2
If this is the same surgeon that performed the closed excision I would not get it done with him.
If he was skilled surgeon he would've performed the cleft lift first.

I'm telling you - do not do it with this man. You're making the right decision with cleft lift but get a hall of fame surgeon from here.

Your story sounds very similar to mine - I went with miss Senapati in Portsmouth
 
#3
Hi Louis,

Did you end up getting the Cleft Lift? How was it? I plan on getting this done by Dr. Bascom in the next few months. After having a wound for over 4 years I've just had enough. However I am very nervous about the procedure and how my bum will look afterwards. Any advice would be much appreciate! Thanks, hope all is going well.
 
#4
Hi Louis,

Did you end up getting the Cleft Lift? How was it? I plan on getting this done by Dr. Bascom in the next few months. After having a wound for over 4 years I've just had enough. However I am very nervous about the procedure and how my bum will look afterwards. Any advice would be much appreciate! Thanks, hope all is going well.
Hi there,

I had a cleft lift on Monday with Miss Senapati.

Things seem good at the minute, still sore but certainly getting better each day.

I will not lie I had a photo taken when my drain was taken out by the nurse and my bum did look different but it will change over time!

If you have any more specific questions just let me know!
 
#5
Hey , I just underwent cleft lift surgery about 4 weeks ago and I started experiencing my drainage site leaking. It hadn't been leaking for a long time now (since my doctor removed the drainange tube). It almost looked like a pimple before it started leaking. Now my caretaker has been soaking it a couple times a day. The soaking helps a lot to minimize the amount of liquid that comes out. Is this normal for people to expereince drainage a month after surgery on the drain site. Or could it be infected??
 
#6
Hey , I just underwent cleft lift surgery about 4 weeks ago and I started experiencing my drainage site leaking. It hadn't been leaking for a long time now (since my doctor removed the drainange tube). It almost looked like a pimple before it started leaking. Now my caretaker has been soaking it a couple times a day. The soaking helps a lot to minimize the amount of liquid that comes out. Is this normal for people to expereince drainage a month after surgery on the drain site. Or could it be infected??
Hi Ben,

It is my understanding that the wound opening up slightly and leaking fluid is not uncommon (happens in about 1/3 of cleft lift procedures).

However 4 weeks for this to start does seem a long time, I would visit the surgeon or even your GP for some antibiotics.

How has the wound been apart from this little episode?

I am amazed the amount of healing that has happened even 9 days post op, with very little pain.

Best wishes, Louis.
 

Breathe

New Member
#7
Hi Ben,

It is my understanding that the wound opening up slightly and leaking fluid is not uncommon (happens in about 1/3 of cleft lift procedures).

However 4 weeks for this to start does seem a long time, I would visit the surgeon or even your GP for some antibiotics.

How has the wound been apart from this little episode?

I am amazed the amount of healing that has happened even 9 days post op, with very little pain.

Best wishes, Louis.
I am SO happy to hear you're doing well Louis. Your long road just might be over.

I've had 2 surgeries in the past, both closed excision. Unforntlatey the wound opened up about 4 years ago and I chose to live with it because emotionally I couldn't deal with another surgery. As of recently though, I heard about the cleft lift and have been extremely intrigued. I'm looking into getting it within the next few months.

Please keep us updated with your progress if you can. I'm very interested to hear how your recovery goes.

Wishing you all the best!
 
#8
I am SO happy to hear you're doing well Louis. Your long road just might be over.

I've had 2 surgeries in the past, both closed excision. Unforntlatey the wound opened up about 4 years ago and I chose to live with it because emotionally I couldn't deal with another surgery. As of recently though, I heard about the cleft lift and have been extremely intrigued. I'm looking into getting it within the next few months.

Please keep us updated with your progress if you can. I'm very interested to hear how your recovery goes.

Wishing you all the best!
Hi Breathe,

Thanks for your kind words!

I am now 9 days post op and it is crazy how little pain I am in. Completely different feeling to closed excision and so so much easier to keep clean etc.

I went to see my Doctor today and it is the first cleft lift/closure they had seen and were pretty amazed. It's mad how little awareness there is of this type of surgery.

When I have healed I will post some images also.

Please get in touch if you need any questions answering!
 
#9
Hi Louis,

Glad you went with the Cleft lift, and alls healing well! Its really the best option out there.
Im wondering how your experience with Miss. Asha Senapati? I went with Mr Carapeti in London
Generally the more i learnt about this condition before my surgery the more I got worried! But it did help with recovery
and picking the best doc.

One note, if ur scar is really itchy and discoloured it may be hypertophic, turning into a keloid (a scar that keeps growing) defo talk to ur doc if u have that
 
#10
Hi Louis,

Glad you went with the Cleft lift, and alls healing well! Its really the best option out there.
Im wondering how your experience with Miss. Asha Senapati? I went with Mr Carapeti in London
Generally the more i learnt about this condition before my surgery the more I got worried! But it did help with recovery
and picking the best doc.

One note, if ur scar is really itchy and discoloured it may be hypertophic, turning into a keloid (a scar that keeps growing) defo talk to ur doc if u have that
Hi Howie,

My experience with Asha Senapati has been good so far - I am seeing her again on Monday so will see what she thinks.

I did read about Mr. Carapeti and heard good things.

You see this was my problem, I read very little about the condition before my first op. and this was not ideal!

Knowledge is the way to beat this!

All the best, Louis.
 
#11
Hey guys....it's been 3 and a half weeks since my open wound surgery....my packing gauze always has a greenish brown gel like substance..is it good or bad? Can someone help me with some true advice?
 
#12
In the first week post op I had a sturture broken and a blood clot formed in the wound...and my surgeon stitched me up without any anesthesia.i had to bite my pillow as a reflex to the pain it was damn painful..but now I'm fine pain is all gone...all is now I'm just waiting for my wound to fill up and my flesh and tissues to reconstruct...anyone have any ideas bout healthy foods which will help me heal faster though my doctor said it must take at least 3 months to heal fully.
 
#13
In the first week post op I had a sturture broken and a blood clot formed in the wound...and my surgeon stitched me up without any anesthesia.i had to bite my pillow as a reflex to the pain it was damn painful..but now I'm fine pain is all gone...all is now I'm just waiting for my wound to fill up and my flesh and tissues to reconstruct...anyone have any ideas bout healthy foods which will help me heal faster though my doctor said it must take at least 3 months to heal fully.
Protein for healing.
 
#14
Hey guys....it's been 3 and a half weeks since my open wound surgery....my packing gauze always has a greenish brown gel like substance..is it good or bad? Can someone help me with some true advice?
Hey it sounds normal enough. When it's infected you'll know. It's red, aggressive, stinging/itchy, pus discharge.

What you described sounds like normal healing. Light yellow is okay. Dark yellow and green signifies infection....also look out for swelling.

With regards to food, eat a balanced diet with all macro and micro nutrients. Protein alone won't heal you any faster. If you're looking for a good source of protein eat eggs. They have a full amino acid profile.

Also, smoking delays healing if you smoke.
 
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