Open Excision

flingle

New Member
History

I noticed a lump on my tailbone about 20 years ago, went to the GP but it was not diagnosed correctly at the time so I left it, it didn't really bother me that much and rarely got infected, my advice at this stage is DO NOT LEAVE IT, I didn't do anything about it for 20 years, in that time the sinus tunneled down my natal cleft forming several cysts along the way then when on holiday in France a few years ago I noticed a lump about 2cm from my anus which subsequently burst, this was another cyst, I knew at this stage I had to do something about it.

I did a lot of study on pilonidal disease, browsed a lot of medical journals looking for optimal treatment, my conclusion is that there is still no definitive treatment for pilonidal disease and what is offered to you might not be the best option, SHOP AROUND, get second opinions, it took me 3 years to finally get referred to the surgeon I wanted to do the surgery, Miss Asha Senapati who seems to be the leading expert in this in the UK, luckily she is working on the NHS out of St Mark's Hospital in Harrow, I was booked in for an operation on the 8/11/2019.

When I saw Miss Senapati in clinic for our initial consultation she asked "how do you feel" and I said "fine", she was surprised at this and said cause I was constantly infected I should feel ill all the time, this was like a revelation to me, I think I have been feeling ill everyday but I got so used to it after so much time that it just felt normal to me, my wife says I complain about feeling ill pretty much everyday, so this disease is not just a mechanical disease and does your whole body even if you think it's just a lump.

Needless to say I have been terrified for the weeks leading up to the OP, this forum helped me a lot and there are some stories on there that really help, you will see a lot of problem stories, but just remember that you will always see more problems that good stories on forums.

Surgery Day

I arrived at 7.30 at Ealing Hospital (Miss Senapati operates here for some reason), went through the motions of pre-op, height weight, medical history, then Miss Senapati came to see me to discuss what they would do, as mine was so extensive and on both sides, a cleft lift was not possible and it had to be an open excision, this was the 1 option I didn't really want but she assured me this was really the only option at this stage and a cleft lift might be possible at a later stage, having browsed all the journals I know she is the most surgically conservative surgeon out there with multiple talks about alternative techniques to wide excisions and minimal invasive surgery so i trusted her with what she needed to do.

I went to theatre, they administered the drugs and that was the last thing I remember, I woke up what felt like immediately in recovery with a nurse watching over me, I was absolutely freezing (they keep theatre cold for infection control) so they put a special warm air blanket on me and I felt a lot warmer, I felt a little woozy like tipsy, no sickness and I actually felt fine, no pain, I was given something to drink and something to eat, was asked to pass urine (checking for urinary retention), after a few hours I went home.

All in all, I was worried about nothing, trust me, don't delay, get something done about this disease before it gets any worse as it won't go away on it's own and will just get worse, if you're embarrassed, don't be, the medical professionals have seen it all before and it will just get worse.

Day 1 Post OP

Woke up feeling absolutely fine, 0 pain - none which I'm quite surprised about, went to the nurse for my first dressing change, no problem, lot of blood but very small pain on dressing change, literally just a tiny tiny bit sore.

I'll keep this post updated as I recover and hope it helps someone to get treatment and alleviate some fears.
 

flingle

New Member
Day 5 Post OP

I've had a little pain since day 3, more like a scratch kind of sore, nothing too bad, but it does seem to get slightly worse after dressing changes which I'm having daily at the moment, so my advice is to take some painkillers 30 mins before your appointment.

Speaking of appointments, once you know your surgery date ring your GP and organise nurse appts, I waited until the OP foolishly thinking there would be some kind of follow-up with regards to dressings, nope, the hospital don't care, they've done their bit so now you have to organise your own dressing appointments, which would not have been too bad had my surgery not told me that their nurse was off and they had no appointments for a month - which basically means I would have to sit in the urgent care centre for up to 4 hours per day just to get my dressing changed, luckily I managed to escalate this to the GP management and I've now got some appointments at least.

Pain is really minimal, I took my first shower today - I know it's disgusting but I just couldn't till now, had to face the fear of removing my dressings and looking at my wound for the first time, really really nervous, don't know if I'm going to cry or laugh.

It's really not that bad, yes there is a huge hole / slash in me but after all these years of feeling ill and discomfort I know it's for the best, I actually really feel good in myself for the first time in a long time, I'm guessing because I'm not constantly infected.

I was reluctant to remove the packing itself but the shower took care of that and it kind of fell out, after I dryed myself with a hairdryer.

I'm taking multivitamins daily and eating lots of protein.
 

lpiso84

New Member
Hi! I also have just had excision surgery just a few days ago! I had it on a rather small scale - I discovered my cyst January 2017 and though my flare ups were never extremely terrible, you are absolutely right in that it only can get worse so I decided to get the excision with a surgeon that I trusted as a preventative measure. I am also surprised at how minimal the pain is! Looking at the wound and changing the dressing is a little bit scary but now that I've done several of them, it is more of a nuisance than anything else. Just wanted to say you aren't healing alone right now and I hope you heal quickly!

Furthermore, I was wondering if your surgeon gave you any tips on how to prevent this problem from occurring again? I.e. any measures that can be taken during the healing process and beyond? Doing my best to keep the wound dry after the shower and inserting gauze moistened in sterilized water and all that to prevent infection. I have my follow up with my surgeon on Tuesday so I will ask him then, but curious if there's anything else I can learn.
 

flingle

New Member
Thanks for the kind words, knowing there are other people going through the same thing really does help.

Changing the dressings is terrifying, I've only managed to remove my dressings once so far, it's strange when it's your own body, If I saw this wound on someone else i'd probably be sick but when I saw it I just thought - "well that's that, can't go back, let's just do whatever I can to heal"

In terms of wound healing, my surgeon is really good but a lady of very few words, all I got before I left was "it all went fine, see you in six weeks", you are better off asking the nurses for advice on the healing side as they really are the experts, the advice they have given me so far is:

Plenty of protein, fruit, generally a balanced diet - I'm taking multivitamins daily to supplement and keeping the wound clean and dry, just obvious stuff, diet is really important, it's your body that's gotta heal this thing so give it what it needs.

In terms of re-occurence prevention, I don't have any advice, in fact my surgeon said, this will probably re-occur, but I'm just taking it one day at a time at the moment.

When you see your surgeon please reply back here with any advice given as I'd appreciate it.
 

lpiso84

New Member
Oh yes, if I saw my wound on someone else I'd probably evacuate the room as well. But since its our own it's just the human survival instinct that probably goes "alrighty, let's deal with this how we have to and keep going" Sometimes I feel like I have no idea what I'm doing, but I hope gently just sticking the gauze in there will do the trick. I'm hoping the sterile water and the 2x changes after a shower will help keep the process smooth. I was also wondering, do you sometimes have some soreness after dressing changes? I have a little bit of soreness after every change, but it typically doesn't last long. Maybe about 15 or so minutes.

Wow! Six weeks before you see your surgeon? That's quite a while. Although I would say that indicates she's confident you'll heal normally and isn't very worried about any healing problems.

Ah yes good to know! I bought some protein shakes and protein bars to help on days I don't eat enough lean meats, and I'm making sure I'm eating at least a couple fruit and vegetable servings every day. I've also read about studies that show Vitamin C is a key component in wound healing, so I have a small Emergen-C packet in water every day, it has Zinc and Manganese as well which also help with wound healing as I've read. My surgeon said that vigilant (but not aggressive) washing of the area, and occasional hair removal if necessary, is the best way to prevent reoccurrence as most of those who get the issue to return are those who assume they don't have to pay attention ever again after the wound has healed. In an ideal world, that sure would be great! But I think we all have to just take the extra 10 seconds every day to inspect the area and keep it clean and dry for many years later. Someone who has had this problem before and recovered from surgery said they carry around baby wipes and Stridex pads to clean their surgical site during long days and during summer days at the beach and what not, even years later, but haven't had any issues since. Small price to pay to be cyst free, though!

I'll post a reply after seeing my surgeon for sure! *Knocking on wood* hopefully I'll get only good news:)
 
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brodie-mai

New Member
Hi. Not sure if you're still active as if you've had no more problems probably not! I had my first excision surgery in February, got an infection of the wound and exactly one week later was in for debridement of the wound. Everyone I've seen has said it's the biggest pilonidal wound ever! I luckily live with my mum so when all of this corona virus started it was dangerous to go every day for dressing changes (which I still need a month after op) so she has learnt how to do it. Ealing is quite local but I went to Mount Vernon to see surgeon Ms Ijaz who is absolutely brilliant! She done the surgery at hillingdon hospital and has been phoning me every Wednesday for telephone appointments due to corona. If anyone in the area can ask for her they should!
I just want to know how you're getting on now. My wound was 4 cm deep and 5 legnth ways about two weeks ago and has been closing up really fast now. Some days a slight smell, just want to compare it with you. How is your wound (or hopefully scar) doing now?
 

flingle

New Member
Hi, I'm glad to say I've had no problems at all, my wound was pretty deep like yours 4cm deep and about 10cm long and I honestly thought it would never heal but it's now down to about 1mm deep with a couple of slightly deeper parts, but all in all I am doing really well.

My routine post OP consisted of doing my motions about an hour before my dressing change, then immediately bathing in a shallow bath of mild salt water and cleaning the area thoroughly, then drying off the area with a hairdryer before leaving it open to the air for an hour before dressing change, coupled with lots of fruit and veg in my diet has helped to heal the wound.

I've had 0 problems thankfully and my scar is so much smaller now, so glad you're doing ok, it will close up in no time.
 

6yearwonder

New Member
Hey I know this is an old post but how was the process getting to see Miss senapati? I’ve recently asked my GP for a referral and he thinks it might take some time to get it to go through. I’ve got my scar from previous surgery’s breaking down and chronic pain and infection so I would like to prepare myself for the sort of time scale it would be.
 

flingle

New Member
To be honest, my experience was not good, I was lost to follow up, they lost my MRI and I had to have it done again, then I was booked for the wrong consultant, it took me 3 years to eventually see Miss Senapati, some of that was my fault, that's not to say you will have as disastrous referral process as me, good luck
 
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6yearwonder

New Member
To be honest, my experience was not good, I was lost to follow up, they lost my MRI and I had to have it done again, then I was booked for the wrong consultant, it took me 3 years to eventually see Miss Senapati, some of that was my fault, that's not to say you will have as disastrous referral process as me, good luck
Ok that’s terrifying! Was that down to the hospital or GP side of it? I’ve had a lot of trouble with things going missing and not being done. When I had my first surgery I had a seton stitch put in and a wound that was about 5 inches. No one told me and no nurse appointments were booked for it either. My cleft is really deep so you couldn’t see it and I was so scared after my first surgery’s I couldn’t bring myself to look at anything they did. It was only when I went for my first follow up my stunned consultant sent a nurse in to dress the wound for the first time! So yeah lack of communication is always my fear with everything!!
 

6yearwonder

New Member
Hey I’ve just seen a specialist and I’m now in the same boat that mines so extensive I have to have an open excision. This was my worst fear. Are there any tips with the actual wound care that could help with healing as I famously don’t heal after surgery lol and never really got any decent care after my previous excisions so I really want to give this a fighting chance as once the bottom of it heals and the infection is gone I could stand a chance at some sort of cleft lift.
 

flingle

New Member
An open excision was my absolute worst fear and I nearly said no, but with large ones that's all they can do so what else can you do?, there is no point living with it and when I look back now I have to say my experience has been really good and nowhere near as bad as I thought it could be and so worth it!, from the surgery itself to the daily packing, I was worrying over nothing and I wish you luck,

This was my daily routine whilst having packing:

About 90 minutes before the appointment I would run a shallow bath and add loads of salt, I then take off the previous packing

Without being gross, this is the time I would do my daily ablutions just before getting in the bath.

I then sit in the bath and wash the area thoroughly and I mean swish that water up and down the area

Then I get out of the bath and pat the area dry and use a hairdryer on the area for a few minutes to dry it completely.

I leave it dry and open until I get to the GP's which is around an hour or so.

I honestly believe that the timing of the daily ablutions and having a salt bath straight after combined with an hour of "dry" time is what helped me to heal.

Good luck, let us know how you get on.
 

6yearwonder

New Member
Thanks for replying! What sort of salt did you use? I’ve tried it before and I feel like maybe I wasn’t using the right kind? There’s so many different ones out there lol. As for healing how was the journey I think my real fear is that it just stops or I do something wrong. I feel like I don’t really want to sit or move around too much to make sure it stands a chance but then obviously maybe that could help the healing. I think it’s the past experience with a real lack of advice and after care that has got me like this. The specialist is asking my local surgeon to actually do the surgery also as the journey to them is too far they think and there’s this lack of trust I have in everyone even though I know most colorectal surgeons would have no problem doing it and it’s a ‘simple surgery’ according to the specialist but it’s sending me crazy now I have time to think about it.
 

flingle

New Member
I just used plain old table salt,I added quite a bit as the hot water ran and let is dissolve.

For the first week or 2 I was in fact advised not to put pressure on the area, so I spent a couple of weeks watching telly and working at a sideways angle resting on my right butt cheek with a really soft pillow on the left to try and reduce the pressure as much as possible, but even that was not so bad, just take it easy.

I was advised to eat plenty of fruit/veg.

After care - it's a good nurse you need, chat to the nurses doing your packing, ask their advice, they are the experts, I got all my advice from the nurses and they were an absolute godsend.
 

Spokm34

Very Helpful
Hey I’ve just seen a specialist and I’m now in the same boat that mines so extensive I have to have an open excision. This was my worst fear. Are there any tips with the actual wound care that could help with healing as I famously don’t heal after surgery lol and never really got any decent care after my previous excisions so I really want to give this a fighting chance as once the bottom of it heals and the infection is gone I could stand a chance at some sort of cleft lift.

Get pico dressings it heal it to size of a pea until you can get cleft lift refuse open surgery you won't ever heal from it, try not use aquacel it makes the wound worse and breaks the skin down and no end of infections
 

Spokm34

Very Helpful
Cleft lift is the only way to go try get an appointment with senapati she is seeing patients now,

Don't let consultant fob you off with open excision it's the worst outcome ever they get paid for these wounds once you had it they send you off to the nurse's and u never see consultant again,

Packing daily dressings with aquacel won't gain any progress and it just keep going backwards.

Best dressings is the pico 7 negative pressure it can heal large 2cm and even 4cm deep wounds and close it to almost size of a pea,

Senapati is the only piliondial sinus expert in the UK she is the best to end this disease for life.
 

6yearwonder

New Member
Cleft lift is the only way to go try get an appointment with senapati she is seeing patients now,

Don't let consultant fob you off with open excision it's the worst outcome ever they get paid for these wounds once you had it they send you off to the nurse's and u never see consultant again,

Packing daily dressings with aquacel won't gain any progress and it just keep going backwards.

Best dressings is the pico 7 negative pressure it can heal large 2cm and even 4cm deep wounds and close it to almost size of a pea,

Senapati is the only piliondial sinus expert in the UK she is the best to end this disease for life.
like the op on this post my disease is extremely extensive and due to the wounds coming right down and to the side of my back passage (even involving my sphincter to begin with years ago) I can’t even have a vaccum type dressing near there. The specialist I saw worked with senapati and said my case was very complicated and he couldn’t offer me a cleft lift of any closed surgery due to the infection and extent of it it would just fail. Hopefully like op this surgery will give me options to maybe have a cleft lift as a preventative operation once I’m healed but this is my only option right now so I have to come to terms with that.
 

6yearwonder

New Member
I just used plain old table salt,I added quite a bit as the hot water ran and let is dissolve.

For the first week or 2 I was in fact advised not to put pressure on the area, so I spent a couple of weeks watching telly and working at a sideways angle resting on my right butt cheek with a really soft pillow on the left to try and reduce the pressure as much as possible, but even that was not so bad, just take it easy.

I was advised to eat plenty of fruit/veg.

After care - it's a good nurse you need, chat to the nurses doing your packing, ask their advice, they are the experts, I got all my advice from the nurses and they were an absolute godsend.
Thank you so much for the advice no doubt once I have a date and things are moving I’ll be back on here stressing lol. But you’re giving me a lot of hope that this time it can work. I’ve got a tissue viability nurse seeing me aswell at the moment so hopefully she’ll have lots of ideas as well to come up with and things will be better this time! I’ve invested in one of those u shaped full body pillows so hopefully that will get me comfy and off my back whilst I’m recovering as even after a few of these ops I hate lying on my tummy !
 

Spokm34

Very Helpful
like the op on this post my disease is extremely extensive and due to the wounds coming right down and to the side of my back passage (even involving my sphincter to begin with years ago) I can’t even have a vaccum type dressing near there. The specialist I saw worked with senapati and said my case was very complicated and he couldn’t offer me a cleft lift of any closed surgery due to the infection and extent of it it would just fail. Hopefully like op this surgery will give me options to maybe have a cleft lift as a preventative operation once I’m healed but this is my only option right now so I have to come to terms with that.

Damn you're case sound's very complicated I've never experienced it they put the pico 7 dressings on me and it healed me from 2cm deep to size of a pea wound, normal dressings I found just didn't work at all aquacel made my wound worse and I kept getting infections soon as I stopped normal dressings and I went private and used pico dressings it stopped the infections red skin and boosted my heal time insanely quickly.

I don't know what to suggest for you're wound sound's very complicated I hope you can find a recovery
 

Spokm34

Very Helpful
I saw senapati today very nice consultant she can offer me cleft lift in January but only if i ain't fully healed by December.

I think senapati is very good.
 
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