As well as living with Still’s Disease, over the past couple of years I have also developed a condition called Hidradenitis Suppurativa, due to being on Prednisolone for so many years. Hidradenitis causes swelling, abscesses and leaky channels to the surface of the skin, particularly around lymph and sweat glands (lovely I know). Last August I had a procedure to remove the worst affected area in my left groin, a procedure that took a long time to recover from, since it means leaving an open wound to heal. Eventually though, it did heal and I was just left with a neat scar. The surgeon wanted to do the same procedure on the right side, but it seemed to settle down, plus I became so poorly with the Still’s that it wouldn’t have been possible until now anyway.
But now, I do need it doing. With the reduction of the Prednisolone the right hand side has flared up again and is swollen and sore with some drainage every now and again. Even the left side, below my scar and previous site, is tender. I think this is what happened last time too – that my HS flares seem to be related to reducing the Prednisolone, although I’m not sure why that would be. So yeah, I should really have it seen too. The difficult thing is that I have been through so much illness this year and am just starting to feel pretty good, with lots of positive things happening in my life, that it is hard to make the phonecall to arrange the surgery and put myself back into the ‘sick’ role 😦 I was really lucky last time; as horrendous as the wound looked, it was never extremely painful and I had minimal infection. This time could be different and could set me back. There are risks as with any surgery.
The other thing is that I want to aim to go back to work in September, so I would prefer to get it done sooner rather than later, as I do not want to have to take time off for something else (did I mention I already need a procedure to take two wisdom teeth out?!) At the same time, I remember the discomfort of having an active HS site when I was last at work – that was not easy either. Plus, if the site becomes infected, it will jeopardise my Infliximab treatment and that’s the last thing I want.
There is so much to consider, so I’m giving myself this weekend to mull it over and if I decide to go ahead with it, I’ll phone on Monday.
What would you do?
Edit: I just reread the HS information on the above link and strangely, Infliximab is one of the suggested treatments so in theory I shouldn’t even be having this flare of it.
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It’s about twelve weeks since I had my Hidradenitis surgery in August and time to see the surgeon again, for a check up on the wound and also the second site, which may need similar surgery.
We arrived at the hospital in plenty of time for my appointment, but it was only after a two hour wait that I finally went in and saw the surgeon. He was pleased with how my wound had healed (almost completely now) and as I suspected, felt that the second site would benefit from the same procedure as it is already creating tough scar tissue around the tracts, which is uncomfortable, an infection risk and also unsightly. Okay, surgery does leave a scar but I’m surprised at how neat the first one has turned out and hopefully it will fade in time, meaning that’s much preferable to what was there previously. I just hope he does an equally neat job this time round.
I’m not exactly looking forward to having an open wound again, going through the daily clinic visits and so on, but it’s better to get it out of the way all in one go rather than put it off; plus, if I did put it off, it would probably need more extensive surgery. So, I read through the consent form and will receive a pre-op assessment date in the post shortly. I hope it’s after Christmas at least.
For those that are interested in how these wounds heal, here are a couple of more recent photographs.
At 10 weeks and 12 weeks
You can compare these pictures to those taken at three and six weeks as well as a list of related posts, here.
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Had my weekly appointment with the nurse to check my wound this morning and was mixed news. The good news is that it looks like the Pseudamonas infection has cleared up, phew. The bad news is that the centre of the wound is still not healing over, which it should have done a while ago now. Obviously, all the medication I take for Still’s Disease means that I do heal at a slower rate, but even taking that into account it’s been going on too long.
So the solution she came up with is to have the area cauterized. Sounds painful, as to me the word ‘cauterize’ conjures images of sizzling, smoking flesh… but in this case they just use a silver nitrate ‘pen’ and so the procedure shouldn’t hurt. The idea is to seal off the blood supply to the rogue tissue and remind it to heal over; she thinks there is a good chance it will speed things along a bit.
Since I was heading that way anyway, I offered to take the prescription round to my GP surgery and picked up my repeat while I was there. The GP himself was behind the reception desk and asked how I was – how nice to be at a surgery where the doctor doesn’t rely on notes to know who you are! He also mentioned that he’d noticed I wasn’t taking anything to protect my bones alongside the Prednisolone and wanted to add something to my prescription. I explained that I’d had CalciChew D Forte in the past but it had made me sick and previous GPs had said there were no alternatives. He rolled his eyes and suggested something called Adcal-D3, even offering me a choice between Lemon and Tutti Frutti – I felt spoilt!
I’m glad he mentioned it to be honest as it is something that I’d been meaning to sort out myself but kept getting pushed aside by other things. I already have evidence of thinning bones and Osteoporosis runs in the family so I need to protect them as much as possible. I’ve had no negative effects from taking the Adcal so far… in fact, they’re quite tasty! (I definitely recommend tutti-frutti!)
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I haven’t had the best of weeks this past week as I think I must have picked up one of the lovely winter bugs that is knocking around and it knocked me for six. I never seem to get the cough/cold side of things but feel like my body is working overtime to fight something off, leaving me with temps, racing heart, weakness, fatigue and general yuckiness.
The last time I posted I was hopeful that the Tocilizumab was starting to take effect as the swelling in my right knee had subsided. Unfortunately, this was short-lived and a day or so later the knee had swelled up again and is back to being hot and stiff. My left arm is starting to seize up again too, although I’m trying to keep the joint moving as much as I can, with gentle exercises, to pevent this.
I’m not saying the Tocilizumab won’t work, just that it’s probably not going to this month.
There is still a bit of infection in my wound but it is healing and we are making slow but steady progress. The remaining tissue is about 1cm x 6mm, so not far to go at all. We have moved on to smaller dressings and weekly clinic appointments, woo hoo! 🙂
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So seven (or is it eight?) weeks after the Hidradenitis surgery, after things going so well, I noticed that my dressing was completely covered in a blue-green drainage two days running, plus the wound was getting quite sore.
I mentioned both of these things to the nurse at clinic this morning and as soon as she removed the dressing she said it was a Pseudomonas infection.
She covered the wound with iodine and I’ve got a general antibiotic, Ciprofloxacin, until the swab results come back and show what specific antibiotic I need. She also told me not to look into things too much online as there is some quite frightening information out there. Anyway, hopefully we have caught it pretty quickly.
At least I know why I’ve been feeling so grotty though.
Edit: This post has been viewed many times by people wondering about Pseudomonas, so I have decided to add a photograph of the dressing and blueish discharge. I’m sorry if this grosses people out, but it may help others identify an infection before it gets too serious.
The blue-green discharge of Pseudomonas
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The other thing that I wanted to update about was the Hidradenitis Surgery I had at the end of August, which left me with an open wound on my inner left thigh. The nurse was initially concerned about me travelling to New York before it had healed properly, but felt better once she realised I was capable of looking after the wound myself.
Apart from changing the dressings every couple of days (and laying Aquacel onto it), I barely noticed it was there. It continued to heal nicely, although not as quickly as they’d expect due to the Prednisolone. Last week, the nurse laid it with something similar to aquacel but which encouraged faster granulation and healing – it made me itch like crazy but after keeping it there for 3-4 days, the wound had reached skin surface level and so now all it needs to do is close in from the sides.
At my last appointment on Thursday, she decided it didn’t even need the Aquacel anymore, so I am now down to straight Softpore dressing. I’m really pleased with how the whole experience has been – of course I’m still keen to see how the scarring turns out, but so far I have not been put off having the surgery again if required.
Talking of which – the site that developed on the opposite side no longer drains; there are still two tiny holes/tracts in the skin and the skin itself is thickening but I’m hoping this is just self-healing and that I won’t need the surgery in the too near future at least. I next see the surgeon on 16th Novemeber, which leaves plenty of time to evaluate how things are looking.
I really hope that once the healing is through, I can have a break from all things abscess related at least.
Ps. I’ll try and post some photos showing the wound at different stages of the healing process.
Edited to add photos:
Wound at three weeks and six weeks
Post-Op (Day 2)
Dressing Changes etc (Day 4)
Wound Update (One week)
Post-Op Appointment (Three weeks)
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Posted in Uncategorized, tagged Hidradenitis, Hidradenitis Surgery, Joint Pain, Methotrexate, Orencia, Painkillers, Still's Flare, Wound Healing, Wound Packing on September 10, 2011|
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The past couple of days have been quite bad Still’s-wise; today is slightly better but I think that’s down to me switching back to my regular Tramadol rather than the Prolonged Release form I had been trying out. That didn’t seem to keep the pain away enough at all.
Since waking up on Wednesday, there has been a lot of joint involvement – my left arm joints suddenly felt a lot worse, with the elbow even more restricted than usual, both knees felt painful, tight and stiff as if there was fluid in the joint (there may be, just not as severe as when I was a teenager and they swelled up like footballs), plus my right hip is extremely wince-worthy painful, meaning I can’t lift that leg on its own and have to take stairs etc. one step at a time.
It really isn’t looking promising for the Orencia / Methotrexate combination. I’ve now had two doses of the 15mg Mtx and that is the only thing to have changed – funny then, that I feel worse. Still extremely tired and so I’m giving myself rests in the afternoon and going to bed earlier again; I figured that my body was working over time to heal this open wound after all, so I will listen to it. Hopefully, after my infusion and Rheumy visit on Thursday (expecting to need some joint injections), I’ll have much more energy for New York. Besides, I’m so excited that I’m sure I will run on adrenaline alone.
I’m no longer too concerned about my wound and travelling. The nurse was very pleased with the progress it had made and reduced my clinic appointments to twice a week. The rest of the time I am to change the dressings myself and she has given me everything I need to do so. I’m getting used to it now and can even remove and replace the packing myself, it’s not too bad now I know what I’m facing. Plus the wound itself has improved so much that it is no longer the bottomless pit that it seemed at first; it’s amazing how the body works to heal itself.
I’m surprised that it hasn’t ever really been painful – of all the things that are going on with me at the moment, that is the least of my pains. The Hidradenitis itself is more painful, especially this second site in my left groin. It is nothing to look at really, just two pin-prick sized holes where it has channelled to the surface, but I nearly jumped through the roof when they swabbed it the other day, whereas I haven’t flinched at all with them poking and prodding the open wound. Obviously I’d love for it to clear up itself, but at the moment I’m okay with the possibility of needing the surgery again, but I would like to get an idea of the scarring first.
Anyway, that’s everything for now. There isn’t much I can do until I see my Rheumy really, except maybe ask the GP about some different painkillers again. Looks like I’m back to waiting around for things to improve; it just can’t happen fast enough.
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