Twelve Weeks Post Op Appointment

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.

L

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Wound Update (Week Ten)

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!)

L

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False Alarm?

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! 🙂

L

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Wound Infection

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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Occupational Health Report and Hearing Date

It’s the day after my first Tocilizumab infusion and I’m feeling a bit rotten but Im guessing that is more to do with the long day, sitting in uncomfortable chairs and so on, rather than the drug itself. Thankfully, there has been no further signs of reaction so I’m hoping that was just a one off.

I had an early wound care appointment at the clinic and then I planned to spend the rest of the day taking it easy, to save some energy for tomorrow.  The wound is starting to close up at the ends and turn a nice shade of purple there, but is still overgranulating along one edge, meaning it is not healing as it should. Today the nurse covered it with a double pressure pad to encourage the excess tissue back where it belongs. I don’t think it is a major problem and it isn’t bothering me in anyway, but the scarring will be much neater if it stops overgranulating and heals as planned.

By the time I got back home, the postman had been and I had a letter waiting for me. Inside where two things: Firstly, a copy of the Occupational Health report on my current condition and then an appointment date for my next hearing with the Head and Human Resources – a week today.

The doctor’s report was only a paragraph long but it was still hard to take in his view of me. I’m forever trying to look on the bright side and convince myself that things aren’t that bad, so when I see things in writing from someone else, it comes as a bit of a shock. Basically, he says I suffer from severe Still’s Disease and am failing to respond to potent medications, meaning it is difficult to predict if/when the condition will be stabilised enough for me to return to work. *sigh*

Don’t get me wrong, I’m still sure that we will find a medication that will stabilise things as we have done in the past; I had a good few years with only occassional flareups and minimal joint involvement so I know it is not impossible. But, I also know that it is becoming more difficult and taking longer, and I need to allow myself that time to stabilise without feeling guilty about work.

Which brings me on to my next point: The Stage 2 Capability Hearing. I don’t know what my management is thinking about the current situation, but I imagine that they want someone to be doing my job and would rather terminate my contract than leave the situation long and drawn out. However, I’d also guess that they don’t want to risk terminating my contract in case there was some comeback from the Equality Act, (especially since I work at a SENs School). Then I’m torn between fighting for my job and feeling that I could do without the niggling guilt and added stress (like capability hearings) that come with having it right now.

Even having to think about it all is more than I want to do right now; it is so hard to make decisions and handle situations like this when you feel so flat.

L

Related Posts:

Preparing For Doom,  Work and Other Worries, Work Issues,  Occupational Health Appointment.

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Autumn is Here

The weather outside is frightful, the mornings are darker, the days and nights are getting colder.. looks like we’ve seen the last of our ‘summer’, if you can call it that.  I really had to force myself to go out this morning for my five minute clinic appointment in the next village,  just wanting to snuggle deeper under the duvet instead. But, I made myself get up (at least that is still possible!), stretched out the worst of the morning stiffness and was out before 10am.

I was hoping that maybe today would be my last appointment for wound care but, as always, nothing is straight forward. The wound is now overgranulating on one side and so needs a pressure dressing, plus it isn’t drying up as it is supposed to and so the nurse has laid some Inadine  over it, which should help, even if it does sting.  I have my next appointment on Friday and I think we’re both hoping that will be the last one!

Joints-wise, things always seem to go a bit pear-shaped this time of year thanks to the cold, damp weather.  The thing I have noticed most recently though is just how much noise they are making – crepitus is the medical term for it I think, but basically many of my joints are crunching, grinding and cracking. I’ve dabbled with supplements such cod liver oil, chondroitin and Glucosamine in the past, but do they really help? Maybe I need to look into it more.

In particular, I’ve been having trouble with my neck; all of the above noises plus a lot of pain and muscle fatigue up the left side, so much so that I had to lie down mid-afternoon at the end of last week, to give my poor neck a rest from holding up my heavy head (must be down to the big brain obviously!). Joking aside, it does bother me, since as a child I had to wear a neckbrace to treat similar symptoms. I guess it’s something I’ll have to keep an eye on to make sure it doesn’t get any worse.

Anyway, my fingers are getting cold so I’m off to find a blanket to snuggle under and read, while the wind and rain batter the windows, brrr.

L

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Hidradenitis Surgery Update

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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Saturday Update

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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Post-Op Appointment

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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Wound Update (With Photo)

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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