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Posts Tagged ‘Hidradenitis’

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? :\

L

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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I can’t believe it’s already time for my fourth Tocilizumab infusion; December has just flown, but then I was asleep for most of it.  I’ve been trying to think of things I need to mention,questions to ask etc, wondering if the blood test results will be good again and if they are enough evidence that it is helping the Still’s when I’m still struggling physically. Chances are, I won’t get to see my rheumy but maybe the nurses on the ward are supposed to be monitoring my progress and I should be more open with them?  When they’ve asked ‘and how are you?’ in the past, I assumed they were just being polite, rather than prompting me to tell them how things really are. I didn’t want to bore them with the details if that wasn’t their intention, but I have to tell someone.

On showering this evening, I found three HS sinuses; they are tiny holes, like vampire bites but very deep and can easily get infected, causing swelling, abscess and further pain. No wonder I’ve been so uncomfortable.

I’m kinda freaked out that they keep appearing; I’d assumed it would be a one (or two) off and I’d be free but now it looks like something else I’m going to have to put up with. There is a theory that it is conneceted to having other autoimmune diseases. Lucky me.

Early morning tomorrow so early night for me too.

L

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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.

Ugh.

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.

L

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.

L

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

Related posts:

Surgery

Post-Op (Day 2)

Dressing Changes etc (Day 4)

Wound Update (One week)

Post-Op Appointment (Three weeks)

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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.

L

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Of all the mornings to wake up with the joints flaring, it had to be today, when I had an appointment to see the surgeon for my post-op follow up.  It was such a struggle to get out of bed and ready but I told myself that it would be a quick appointment and that I’d be home resting before long.

Sod’s Law says that I had to be wrong.  We sat in the hospital waiting room for almost an hour and a half, with me so uncomfortable that I couldn’t sit still but struggled to move at the same time.  It took all my effort to stay and not go home; the only reason I did was because I knew that my wound needed redressing and I was hoping to get some feedback.

Again, I was wrong. When I was called in to see the doctor, the nurse said – ‘so you’ve had a little bit of skin removed have you?’  I was a bit confused, since it was more than a ‘bit of skin’ that I’d had removed, but I didn’t want to make too much of it in case they thought I was dramatic. Then the surgeon (not the one that did the actual surgery mind..) asked to see the wound; I made my way over to the bed but he stopped me and signalled for me to just er drop them and show him from where I was sitting.

I tried to explain it had a dressing over the top and he seemed surprised; ‘why are you still using dressings? It should be fine without dressings now’ he said, as the nurse removed them for me, revealing my blood-soaked, packed wound. Needless to say, I was a lot confused!

‘Oh’ he says. ‘That wasn’t what I was expecting’.

Turns out that whatever was written up in my notes, doesn’t quite do justice to my lovely wound and that there was nothing he could tell me for the time being, since it would take a few more weeks to heal properly. Talk about lack of communication!  The whole thing would have been a waste of time if I hadn’t had the second Hidradenitis site to show him, which formed the week prior to my surgery. He took a swab because there was some crepitus (crackling), suggesting an anaerobic infection, and told me that I would probably need the same surgery on that side too. Wonderful.

I have another appointment for a ‘proper’ post-op assessment in six weeks time.

One good thing did come of it though – I was given permission to shower again, woo hoo. I can finally throw the flannels away and have a nice long, hot soak, which I missed greatly!

L

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Yesterday was the first day since my surgery that I didn’t see the nurse to repack my wound and change the dressing. She had said previously that the wound would heal better the more time we left the packing undisturbed, hoped to move on to alternate days, and that if I felt everything was in place and not too soaked, then I could give Sunday clinic a miss.

Everything looked fine when I got up to check early on Sunday morning and it didn’t take much persuading for me to climb back into bed for a much-needed lie in. By lunch time however, things started to soak through the dressing a bit; it’s only blood but the thing is, as well as being a little bit messy, my sensitive nose can smell it and that makes me feel dirty so… The nurse had given me spare dressings, aquacel, saline irrigation, gloves and pinny – the whole kit! – just in case this were to happen and I felt brave enough to give it a go myself, which is what I did.

I followed the instructions she had given me to make sure myself and the area were sterile and set about removing the dressing.  I had only caught brief glimpses of the wound up until this point and so was a bit nervous about what I’d find underneath. I figured it was something I needed to face though, it’s my body after all. I have to admit that it was a bit bigger than I had expected but nothing I couldn’t cope with. I wasn’t brave enough to remove and replace the packing though so just cleaned the edges and stuck a clean dressing over the top. I was so relieved to get the thing on as I’d been worried the packing would fall out, that I’d have no choice but to poke some more in!

It seems that keeping the packing in was the right thing to do anyway, because when I went to the clinic this morning the nurse said that it had done really well with that extra day of being untouched; whereas the tape was just filling the wound beforehand, it was now coming above the surface, which feels like great progress! So we made the decision that we would leave replacing it until my post-op appointment on Wednesday morning. Again, I have the kit to sort things out myself if needs be, but hopefully I won’t have to.

The bleeding is normal by the way, just the body trying to heal itself as the nurse told me. I managed to take a quick picture for anyone interested in seeing what the surgery involves. I’ve no flash on my camera phone so it is quite dark and not gory, but if you really are squeamish this is your warning not to look!

The wound is located in my left groin/top inner thigh; I’m not sure of the actual measurements. The surgeon removed all the infection and the scar tissue, where tracts or sinuses had formed and my body had tried to heal repeatedly. The wound couldn’t be stitched because of the risk of trapping infection inside; if the body heals from the surface layer down than a cavity remains and is perfect for reforming abscess. This way, the body heals from the bottom upwards, meaning nothing gets trapped inside and the area is replaced with healthy tissue. I can’t imagine what the scar will be like, but I doubt I’ll be wearing bikinis for a while!

L

A week after surgery - the packing is still in place here.

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