Lack of healing!!

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I had an operation to remove a pilonidal sinus on 24th july. 5 months on and I don't really feel any better off. I didn't say anything when I first discovered the problem as I didn't think anything of it. I only said something once I found out my brother had the same problem! I must have had the sinus for around 2 years before I had the operation, something which I deeply regret now. The wound was a very deep one and I was expecting it to be a long while before it had fully healed, but not this long! I was told by the nurses about 2 months ago that it was only a few weeks away from being fully healed, but it got infected and has set me back a long way. I have to say I do feel a little let down by the nurses I have been seeing. Fair enough they have a tough job but I have questioned quite a few of their decisions during this recovery period. Surely they should be able to see an infection developing on a nearly recovered wound. The fact I was the one who had to push for anti-biotics to cure the problem is worrying. I feel I have been palmed off in other ways too. Since the infection, there seems to be little or no healing, and despite persistance from myself to either see the surgeon again or visit a wound clinic they have been very reluctant to do anything. The inconsistancy with the nurses has also been a major concern of mine. One day I will see a nurse who says it's not looking great, and the next, I will see someone who hasn't seen it for months, which gives me no idea of how it's doing.

In the last few weeks, I have discovered a lump at the base of my spine, and looking at information on the internet, I'm pretty sure it's a cyst. The annoying thing is that I have told the nurses 3 times about this lump and they either say they don't think it's anything to worry about or they simply don't know what it is. I need closure on this issue and have booked another appointment with the doctor to get to the bottom of it. (I saw him 3 weeks ago with the nurse and he said the wound was looking ok, and that I should give it another few weeks to see if there has been any improvement). There is also a pretty strong odour which is embarrassing. I've got to do something to try and cure the problem. It's driving me crazy and I can't see an end to the problem right now. I'm going to request either being referred back to the surgeon or to a wound clinic. Have any of you been to wound clinics that you would recommend? What are the processes involved? Are they effective?

This problem has kept me from doing some of the things I love, such as playing football, for almost half a year now and will inevitably be longer. There's only so many jokes you can make about it before the depression and annoyance kicks in. It's really getting me down at the minute. Luckily I'm taking a gap year this year and will be going to uni next year, which will hopefully give me time to recover from this nightmare. (Hopefully being the major word!!)

This really is one of the nastiest problems out there!

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5 Replies

  • Posted

    Insist on going to the wound clinic!!!! An odour from the wound is not good - there shouldn't be any smell! I went to wound clinic in Newport - Prof Harding is an expert - they were fab and my wound was healed within a fortnight - even they expected it to take longer (had open wound for 2 and a half years!) They told me that if i'd had my op in Cardiff (where they are based) then it would have been automatic referral to them within 2 weeks of surgery! Good luck, stick to your guns, these things can really get you down!
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  • Posted

    I can totally sympathise with a lot of the experiences you've had. I had an open wound for about 9 months, and although I don't think the wound ever got reinfected properly, it took forever and it was extremely frustrating, probably because it was quite large.

    In the latter stages especially, I found the dressings (rather than the wound itself) really made it stink, which was very embarassing. (I'd recommend Aquacel over Sorbsan as it is easier to remove as doesn't go to mush inside the wound). The only solace I can offer as to the smell is that I think I was a lot more aware of it than anyone else, and when I complained about it to friends, my mum etc, they could never smell it. My fear of the smell seeping out probably heightened my awareness of it!

    Sinuses are in such a difficult place, not being able to see it yourself means you have to rely on those packing it for progress reports, and although I think the standard of care I recieved was on the whole good, i also got varying reports on how it was looking. The wound would sometimes seem to grow as different nurses measured it in different ways, or packed more tightly than others, which was quite depressing until I realised that I'd just have to let it go, me knowing wasn't going to help an awful lot, and look at it from a more long-term perspective rather day by day progress.

    I finally had a second operation to close it once and for all. The surgeon cut a v shaped trench either side of the hole then stitched it up, so there would be no more hole, and no more packing. Although there were a couple of complications afterwards, this op did work in the end, and I met with the consultant again 2 weeks ago to get the \"all-clear\". It was a lot less painful than the first, and I was able to return to an active state much more quickly. Last week I went swimming for the first time in a year!

    I guess I'm trying to say that there is hope! Anyone who's suffered from this has been at that point of dispair when you think it will always be plaguing you, and certainly reading through forums with the experiences some people have had can make you more depressed. But there is an end! If your not happy with the progress your making, or the care your recieving, its best to push for what you do want, as this is the only way sometimes that you'll be heard and people will take note!

    I wish you all the best (and sorry about the essay - was only going to be a short note of encouragement!) xx

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  • Posted

    Thanks for your replies guys. It's reassuring to know that there are other people out there who are going through or have gone through the same thing as me!

    An update on the situation...not good. If anything, things have deteriorated. The wound is no smaller and is bleeding A LOT and I mean a lot! I took the advice from here and have got an appointment back at the hospital to see a specialist. That appointment is on 16th February which is quite a while away and I am quite frankly desperate to get this nightmare sorted out, so am thinking of going private, even though I can't really afford it!! I would have been content to wait for that appointment but the events of the past few weeks have kicked me into action. I went to Charlton a few weeks ago to watch Forest play there. It was a 6 hour round trip and I'm guessing that sitting for that length of time didn't help matters. The next day, I went to the toilet and the wound was literally dripping with blood. It was like a tap, and it doesn't take a genious to work out that things can't be quite right. I told the nurse this the next day but she just brushed it off saying that it looked all right.

    The next development was that they thought the wound looked infected (I say 'they' because the consistancy at the surgery I go to is a complete joke. It's a new person every day, and the person I have seen the most has gone off to India for a month. My message to her - thanks for nothing!! I don't want to sound ungrateful, but I do think a certain amount of blame has to rest at their feet. I had the operation 6 months ago. I wonder if people such as Prince William and Harry would be have suffered for this long had they had it? The fact that the wound was not healing may not be down to them, but I think it's disgraceful that I was the one who had to do research on here to get the referral in the first place. They would have just let it go on and on and play with my life some more. With regards to the infection, I asked the nurse if I could have the anti-biotics when she first detected there might be a problem. The last time I had an infection they waited for a while to give me the antibiotics which made the wound break down and has left me in this situation. She did the same thing this time which really annoyed me. Anyway rant over!)

    I was given the prescription a few days ago and had to fork out £14 of my own money (which is a lot for a poor student who can't work!) because of their incompetance! I have been taking the pills for a few days now and nothing seems to have changed. The only thing that has happened is the awful side effects! I'm on two sets of antibiotics, one of which is very strong indeed. It's the one where you are not allowed any alcohol at all as it may cause liver failure if consumed. Anyway, this morning when I woke up, the wound felt and smelt a little different. When I went to the toilet about an hour or so ago, it bled a lot again, probably more so than last time (and I'm talking about drops of blood all over the floor, the toilet and basically everything!) It's very worrying and I don't think I can wait until the 16th to get it checked out so am thinking about phoning BUPA or somewhere and asking for a quote. I'm prepared to spend whatever little money I have to get this sorted out!

    Has anyone else been through anything similar? How did you sort it out? How long did it take? Any advice to stop the bleeding?

    I really need this to clear up as I'm going to uni next year and taking something like this with me would be a disaster!!

    Thanks for any help.

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  • Posted

    These things are a nightmare. I've already posted about my experiences under \"Stitches, infeection and over-granulation\" but things have changed since then and I thought it would be worth updating you all.

    I had my op on 3rd Nov and had it stitched. 4/5 weeks later, I felt well enough to go the gym, having overcome infection and over-granulation. This turned out to be a false dawn, as a few days later, I was in pain again...I was told it was infected.

    Another 3 courses of antibiotics ensued before I insisted on going back to see my surgeon. Straight away, he said antibiotics wouldn't resolve this, the sinus was still there and still causing problems, so he needed to open me up again and leave it open. He also noticed another sinus further down, but said he wouldn't be touching that as it wasn't causing any problems at the moment and it would leave a much bigger hole if he tried to sort both.

    Anyway, I went back into hopspital last Tuesday. Apparently it's possible for them to inject a dye to see exactly where the sinus is tracking to (don't know why this wouldn't have been done at the outset). When he did this, he saw thta the new sinus was linked to the old one, so he removed the whole lot.

    So now I'm 1 week into my recovery, 12 weeks after I started my first one if that makes sense! I have to say that I am in a lot less pain than I was last time. After the 1st op (which was stitched), I was counting the minutes before my next dose of co-codamol. This time, I'm only taking it in preparation for the nurses coming to pack the wound. It feels like it's healing well at the moment, and the nurses say the same, but I'm certainly not counting my chickens...fingers crossed!!!

    Like you Tom, I'm just desperate to get back to playing footie smile . However, you sound like you've had a terrible time of it mate and I share your views on inconsistency of staff etc, it makes it so frustrating. I'd be on the phone to the hospital demanding that appointment is brought's 3 weeks away, you should tell them you're in a lot of pain. Something else that has really helped me has been taking my wife along to the appointments. Because she can actually see the thing, she can point out to the doc / nurse / surgeon how it is changing. This has been invaluable for me and it makes it much more difficult for them to fob you off. It sounds to me like they should be considering another op. I know that sounds really depressing, I was gutted when I was told that, but it was necessary and it seems obvious to me that antibiotics ain't cutting the mustard for you. I think you should insist your appt is brought forward, consider taking someone with you (if you're like me, you'll have shown so many folk your arse recently that the :oops: factor will have long since gone!) and don't leave there until you have a satisfactory outcome...demand answers. My surgeon continually says that the success rate of these ops is 50/50, there are no guarantees etc, but I still think that being more insistent with him and my GP enabled me to get in for a 2nd op just 11 weeks after my first one. Good luck mate...

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  • Posted

    ok i had my operation for the sinus about 4 days ago, i was stitched up, however iv been reading so much stuff online. the wound is weeping but looks clean and is not red as the moment. is the weeping normal? as it seems to be getting more and more?
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