The Joys of Having a Pilonidal Sinus

After 14 weeks, I’ve been experiencing an ongoing issue with my AP Resection, and in particular a pilonidal sinus. At this moment how long this is going to take to heal or if it ever will heal. Here’s what’s happened so far and what could be happening right now.

A Bit of Background

I have had a small pilonidal sinus for many, many years, perhaps 20 years, and when I was diagnosed I was told that the best thing to do would be to put up with and I’d grow out of if by the time I’m 30 or 40. I’m 40 and I haven’t grown out of it! During most of the time it lay dormant at the top of the cleft in my buttocks occasionally announcing itself by bleeding a little and then almost instantly just going back to laying in wait. 

During surgery to have an abdominoperineal resection (aka an AP Resection or an APR) and it would appear that the pilonidal sinus was increased in depth during this procedure so that post-surgery, in addition to another wound that had been created at the opposite end of the APR, I needed the pilonidal sinus packed on a daily basis. 

At first I wasn’t exactly sure where this additional wound had appeared from as I was under the assumption that apart from the wound at the opposite end that was opened in hospital by the surgeon to treat an infection there was no other wound. In the very early days I can’t accurately recall whether it was actually packed. 

As soon as it was being packed nurses weren’t sure what it was but being familiar with all the trouble I’ve had down below I was pretty confident that it was a pilonidal sinus. Not too long after being discharge from hospital I noticed the early signs of an infection (having numerous perianal abscesses I was familiar with symptoms) and a swab revealed that there was a light infection and I was prescribed doxycycline. That quickly did the trick and I had an appointment with my gastroenterologist to discuss the way forward with Crohn’s and being the very good egg that he is he prescribed me with a higher dose of doxycycline in case of an emergency. That need came within around a week of seeing him. A swab was taken and rather than wait days for the results I started taking the tablets and as presumed it was the same infection.

An appointment with the surgeon it was concerned that it was a pilonidal sinus and he didn’t appear to be that concerned. To be honest I’m not sure where his expertise lies post-surgery and whether that responsibility falls to another team. When I asked for an emergency prescription he preferred not to give me one. Fast forward a few weeks and the usual symptoms appear and there’s another infection – the same infection! 

How Things Stand Today

It’s now been fourteen weeks since having surgery and I’ve pretty much been having my dressings changed daily and yet there’s no light at the end of the tunnel. The wound that was created by shortly after the APR is still present and still does bleed on contact so that’s not fully healed. And then at the other end of the Ken Butt is the pilonidal sinus which pretty much hasn’t improved one iota and if anything has worsened within the past week.

Four days ago, and five days into a course of doxycycline, things started to deteriorate considerably and I started to become increasingly feverish and there was a considerable increase in the amount of blood I was losing from the pilonidal sinus. Here are my thoughts:-

• I went away for four days without having the dressing changed daily by a nurse although I did clean it and recover it (just not pack it). I’m wondering if this contributed to the problems. It may well have but not sure if would have created this many problems.
• Initially I was noticing an increase in blood leaking out but now it’s the creamy discharge that in the past signified an infection. Of course, this doesn’t mean that it’s an infection and it could be discharge from the doxycycline working but is it an indication that there’s something else going on?
• I’m currently on day 4 of feeling feverishness (general malaise, aching, run down, increased heart rate, occasionally elevated temperature (but nothing to put me fully into fever territory). This feeling is very similar to how I used to feel when I was at the peak of a Crohn’s flareup but everything appears normal in terms of what’s entering the colostomy bag so very much doubt it’s related to that.
• And finally, as I’m Azathioprine, my immune system is compromised so there’s a chance that I could have picked up something else but I would have presumed symptoms would have subsided by day 4 not continued.

A Look at the Bloody Discharge (If You’re That Curious)

Click to expand

Could there be side effects to doxycycline? 

Whilst away for the Easter weekend I did a lot of walking in the sun and didn’t do my best to protect myself from it. Only now have I realised that I should be avoiding the sun whilst on the medication but it seems to appear that the side effects are to do with getting sunburnt more quickly or skin issues rather than feeling feverish but I can’t rule that out.

The State of the Ken Butt

Right now I feel as though I’ve stepped back in time to the very early days of post-surgery recovery. I’m feeling an increase in discomfort when standing and waking and sitting has become uncomfortable again. In addition I have noticed a large increase in the amount of blood or mucus that is leaking which can occur simply from sitting, and even standing. This can be extremely embarrassing due to the discharge leaking onto clothes and furniture. 

13 weeks post-surgery and the pilonidal sinus was 6cm in depth (pretty much the same it’s always been) and by the following week (after not having it dressed for 4 days) the depth had increased to 7.5cm. Two days after that measurement was taken the depth was 5.5cm but obviously measurements can’t always be accurate so whilst it may be true, I’m not convinced that it’s healed that much in two days.

After 14 weeks post-surgery, should a pilonoidal sinus still be that deep? Infections will hinder healing (and 3 definitely will) and I understand that they can be bloody stubborn to heal but should I be seeing improvements by now?

So…

I’m not looking for any sort of diagnosis into what’s actually going rather just an insight if you have experience something similar. I understand this may be quite a niche combination but hopefully someone has gone through something similar.