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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