Posting comments – A guide

This site gets more traffic than I ever thought it would when I set it up. It also attracts a lot of comments. This is great, I’m really pleased every time someone tells me how useful it’s been or shares a story or some information that is helpful to other Pilonidal sufferers.

A lot of comments come from people who are looking for advice about what to do with their particular situation. You’re welcome to post this sort of comment, however please bear in mind that there’s a strong chance I won’t be able to answer it. This is basically because I don’t have time, but also because I’m often not in a position to be answering the question. I am not a Pilonidal expert. I am simply someone who suffered from the disease. The internet is a great place to quickly find out about stuff and connect with people, however it’s often not a great place to get accurate personalised information, particularly where health matters are concerned. This has a lot to do with the fact that each medical case is slightly different, because of context, physiology, severity, previous history etc. the list is long. That’s why the best people to speak to to get advice for your situation are healthcare professionals. People who have qualifications, experience, skill and responsibility.

FAQs in comments, and my answers:

Q. You’ve discovered you have what you think is a Pilonidal Sinus what should you do?
A. See your doctor, and be wary of being sent away with antibiotics and no other plan for follow up.

Q. You’ve heard there are homeopathic or other non-surgical ways to cure Pilonidal sinus do they work?
A. Personally I am very skeptical about this. I’m generally speaking an advocate for surgery over medical treatment alone.

Q. Should *you* have surgery?
A. This is a difficult question to answer, each individual is different, as above it depends on lots of factors, it really has to be your decision but take time to consult professionals and be prepared that the healing process can be long and drawn out – what could that mean for your job etc.. You have to weigh it up against the better than average odds that you’ll be on the road to a Pilonidal free life.

Q. You’ve had multiple surgeries and are wondering whether you should go for another?
A. Again this really is a question only you can answer. Consult your surgeon, get the facts and a sense of the risks. More complicated flap surgeries leave you with funky scars, think hard about how you’ll feel about that when you’re better, be prepared and know what’s going to happen and how it will look.

Q. How long will it take your post-operative wound to heal?
A. I really can’t answer this, neither can anyone who hasn’t seen your wound, even then it’s very difficult to say. Your surgeon or the nurses involved in your wound care are really the best people to answer this question.

Q. Your post operative wound is taking a long time to heal – is this normal and what can you do about it?
A. Unfortunately this does seem to be quite common, and the reasons can be many and varied. There are plenty of good guides about wound care and healing on the net. Though it often feels like it will never heal it probably will eventually, unless something is really wrong. Use your judgement, you probably will feel when something isn’t right.

Also to note: if you post a comment it may not appear straight away, I have turned auto publishing off, that means I manually approve all the comments so that if you want to write to me but don’t want your comment made public you can – just ask me not to publish it.

Thanks for reading, and thanks to everyone who offers advice and help to others via this blog.

Homeopathy

It’s a long time since I last wrote on this blog.

Firstly I’d like to say that since 2008 when my last surgery healed up I have had no recurrence. The first year to 18 months after I had been pronounced healed were fairly shaky, I found sitting for long periods of time difficult, and in general I felt aware of discomfort and was nervous that I would do too much physically and disrupt the scar tissue. This has now become a lot better, I feel much more normal and whilst I still have some discomfort sitting, largely I forget that the aftermath of my surgeries exists.

I am very grateful, surgery for my pilonidal sinus was a long and rocky road but it had a good ending.

This site gets a relatively small but steady amount of traffic and comments, and I am always pleased to hear success stories and answer questions if I can. Recently I have started to get a significant number of comments related to homeopathic cures for pilonidal disease. Not well written, with not particularly convincing evidence and mostly clearly pedalling the sale of homeopathic remedies. Thusfar I have decided to delete them.

Yesterday I received a comment which I think is not commerce related and does put forth an opinion seemingly by way of a personal experience to the effect that surgery is bad and should be avoided at all costs favouring homeopathy as the solution to pilonidal disease.

However I am not going to publish this comment, but I thought I should give my reasons. All the evidence I have seen for pilonidal disease cured by homeopathic remedies is highly circumstantial. Is is almost exclusively personal stories, not backed up by scientific research, not endorsed by the medical profession in the UK. Most importantly though, this blog is not about the best cure for pilonidal disease, it is a personal account of my experience with the disease and the care I received from the medical profession in the UK, both from the NHS and the private sector. That is all. I dont want the site to become a debate about whether conventional medicine is the best way to approach treating pilonidal disease or not. In the end, if you are suffering with this condition it is entirely up to you how you decide to approach treating it, but please speak to qualified medical practitioners, preferably ones who have experience dealing with pilonidal conditions before you make a decision.

No more problems

Well, another month on since my last post and I can’t say I’ve had any real problems. The wound seems to be a bit more comfortable now, and I can sit in most types of chair without it being too uncomfortable, which is a big bonus. Running and stretching still feels quite odd and I’m quite cautious about the wound, I haven’t played any sport or done anything particularly strenuous yet and to be honest I can’t think that it’s ever going to feel like I’ll forget about it. I’ve got a section of flesh from the z-plasty that’s pretty numb and apparently will probably stay like that for a long time, perhaps forever.

There’s a bit of the wound right in the crack of my bum which I can’t shave, in fact I don’t really know how you could remove hair from there unless it was done with wax or cream, both of which would have to be done by someone else, I’m not the sure the skin is strong enough for that yet so I’m just hoping that bit of hair won’t cause any problems, it’s right on the edge of the healed wound.

Apart from that, I do get the odd twinge of pain, and the pilonidal paranoia sets in, I’ve been concerned a few times that it’s started up again, but I’m pretty certain it’s just me, the general trend is that it’s feeling better all the time. I’m going to say it. I think it’s healed. There, I said it! At least for now, I think I’m pilonidal free for the first time in many years.

Not 100% convinced but good signs

Well it’s been a long while since I updated the blog, I’d like to have written the post that says “It’s healed!” by now but I’m being cautious. As I told my nurse a few weeks back when she said I should look happier that it had healed, “the thing is it’s not the first time I’ve been told I’m healed and it’s turned out not to be true” I’m not looking on the downside, far from it I’m hoping very much that the end is here, but I’m also wary and previous experience has taught me patience.

I’ve has problems on and off since my last update with the wound bleeding and discharging a bit from an awkward place that is difficult to do much with. It seems to have stopped now but this is the third time it seems to have stopped, so I’m going to wait and see what happens though the signs are good.

Thanks to everyone who’s sent me good wishes, and I send the same out to those with surgeries coming up soon.

Someone moved the finish line

End of week 10 post op

Well, on Wednesday I went to see my consultant knowing that I’d likely come away having been pronounced healed. He thought that would be the case and had told me two weeks previous that he would probably be discharging me. Sure enough when he looked at my wound, he declared that it was looking good and I didn’t need a dressing any more, I shouldn’t have any further problems and he would check in with me in six weeks time to see that all was well.

I went home with a spring in my step which had evaporated by the next day. I already had appointments booked at my GP’s surgery for Thursday and Friday so went along to see the nurse anyway, mostly to say thank you for looking after me but also to check that she was happy with my wound as well. I was a bit surprised when she told me that my wound wasn’t looking too good, there was bleeding and discharge and she could see granulation tissue, rather than skin in the middle. Sure enough when I got home and looked at it, it looked quite different to the previous day. So it got a little bit worse the next day and I have been prescribed some Tri-Adcortyl cream, to put on it. This may settle it down, but the worry is that it has opened up because of the superficial bridging I had a few weeks back, there may be a space left under where tissue has healed and that isn’t a good thing.

So not for the first time I’ve gone from being healed and elated to a few steps back and pretty fed up. It’s a rough justice to have got so far, with so few problems only to have the rug whipped from under your feet. Still fingers crossed that this is an unsteady wobble just before the finishing tape and not a full on crash into the side of the road.

“Drink Me”

End of week 8 post op

Well, like Alice my wound is shrinking, the dressing I now have is only about 2cm square, and apparently it’s nearly there. About another week, perhaps 2 seems to be the current consensus. This is good news of course, I am moving much better now and sitting fine but I have to say, given that it’s so close to healed, I’m still quite aware of it and nervous about it. Perhaps that’s just me, I’m hoping that over time it will get less tender and fragile feeling. There’s going to be no counting of chickens until they’re hatched round here, but it’s a positive position for me to be in, given that I am probably the closest to being free of my Pilonidal Sinus at the moment than any time in the last 5 years I guess. Which is a good feeling.

The end is nigh (sort of)

Middle of week 8 post op

Well, the report from my nurses at the surgery is that it’s getting quite close to healed now. “A couple of weeks” was the verdict. I am going to end up with a dip rather like someone has come and taken a dessert spoonful of flesh out of my bum, which I suppose is not dissimilar to what has happened. Skin is beginning to form on top of the bits most healed and there is just a small portion in the middle of the wound which is still open and needs packing mainly to bring it up to a level where a dressing can sensibly be applied. So I’m off to see my consultant this afternoon and am expecting that he may change what is being used to dress it because it was discussed last week but eventually decided to leave it alone since it seemed to be working.

I went to a meeting about an hour’s drive away with work yesterday and that was ok, just a little uncomfortable after sitting for most of the 3 hours that the round trip took. So life is definitely returning to normal slowly. Incidentally I went to another wine tasting at the weekend and managed to completely avoid even getting slightly drunk, which I thing owed as much to the fact that most of the wine was truly horrible rather than a steely resolve on my part.

Don’t get carried away

Beginning of week 7 post op.

Things I can now do:

Drive – I’ve started to drive to my appointments and to the shops, which has been fine. It’s slightly uncomfortable but not painful, I think the coccyx cushion helps here.

Sit on a sofa – I can now sit on the more upright of the two sofas in my house, in reasonable comfort, this is good for TV watching which previously had to be done standing up or lying down neither of which are optimum television watching postures.

Get drunk and make a fool of myself – to be fair, I was capable of this before now but rather like Luke Skywalker refusing to fight his father in the Return of the Jedi, I had previously used my powers of inner strength in my resolve to be healthy. However my local wine merchant was having a tasting at the weekend and I persuaded my neighbours to come along with me. They also own a copy of Singstar for the PS3. On Sunday not only did I have a hangover, I also had no voice.

 

Anyway, my wound has continued to fill in and is quite shallow now apparently. However it seems that there is a part near the bottom which isn’t easy to see that has bridged over leaving a small hole which isn’t ideal. This will have to be monitored, as it may present a problem. There seems to have been more discharge in the last few days, though this is likely to be because I’ve been more active. The general picture still seems to be positive.

Still going strong

End of Week 5 post op

Well as it turned out, it was agreed that my dressing still needs changing every day. So that’s what’s happening, and apparently progress is still better than expected. My consultant warned that healing would slow though so far there doesn’t seem to be any evidence that it has. The district nurse who saw it today hasn’t seen it since the first weekend post-op, so that’s 5 weeks. Her words upon looking today were “That’s amazing!” which I think is a good reaction. So I’m feeling positive, there doesn’t seem to be any pain to speak of, just a bit uncomfortable. I’m also going to have no knees soon! I’ve been kneeling instead of sitting so much in recent memory and particularly in the weeks since my surgery.

The things I think I’m looking forward to most after 5 weeks of having a dressing and counting are being able to have a proper shower, and not having to have tape ripped off my backside every day. After that, being able to sit comfortably on a sofa, drive and things like mowing the lawn or going to the cinema. Simple things really, that I haven’t done for months or in some cases more than a year.

So nothing particularly exciting to report, but I thought I’d update the blog anyway.

All quiet on the southern back

End of Week 4 post op

Well since Monday’s scare the rest of this week the wound seems to have been looking fine according to everyone who has seen it. The results of the swab aren’t back yet, but there doesn’t seem to be any cause for alarm, which is somewhat of a relief.

In fact the nurse who saw it today said it looked as thought it would benefit from not being re-dressed tomorrow because the dressing was fairly dry, I’m a bit skeptical about that. The theory is that every time it’s messed about with it disturbs the new tissue growth so the longer it can be left between dressing changes the quicker it will heal. The downside being that cleaning it helps to prevent infection and remove the debris from the wound bed.

Anyway, I’m feeling ok and trying not to relax my healthy habits which is easy to do after you start to feel better. Another glass of water and a rice cake beckons … 😉