Posts Tagged ‘Surgery’

I’ve been waiting so long for someone to take action with this chronic abscess/infection problem and today, after over a year of discomfort, drainage and dressings, I finally had surgery to remove the whole area.  As much as I wanted it done, it wasn’t exactly something to look forward to though, but I’ve learnt that sometimes you just have to get through these things.

I arrived on the ward at 7.30am and straight away had to change into a surgical gown before answering the pre-op questions with various people, including nurses, surgeons and anaesthetists.  It originally looked like I was first on the list at 9.00am, but then nobody could find my file so they had to let someone else go before me and I had to wait a bit longer.  The waiting is the worst part; hungry, thirsty and without painkillers, it wasn’t long before I felt uncomfortable and decided to doze off – the best way to pass time in hospital.

At 11.30am I was fitted with my sexy white surgical stockings to prevent blood clots and a nurse took me down to theatre. They managed to get a cannula in the back of my right hand would you believe, but then I have been following as many of those tips as I could. That had been my main concern after my last surgery.  I don’t really feel nervous about the surgery itself at this point; in fact, I try not to think of the things that might have worried me previously and try to relax as much as possible.  By the time they start injecting the anaesthetic, I’m already feeling sleepy and drift off quite pleasantly.

Waking up after surgery is the strangest thing; you hear someone saying your name over and feel as though they’ve pulled you out of some amazing dream but you can’t remember what and you can’t get back.  It took me a while to open my eyes but once I did I came round quite quickly and realised it didn’t hurt as much as I was expecting, just a bit stingy.  When I looked at the clock it was half past two.  After a short peroid of observation, a nurse comes and checks the nappy- like dressing at the top of my leg and gives me some painkillers then, soon after, I was wheeled back to the ward.

By this time, I’m the only patient left, everyone else has gone home. The nurse tells me I can go home too once I’ve had something to eat and drink (and trust me, I don’t need asking twice!), had my wound checked, an appointment for the dressings to be changed made and, oh yeah a wee – you’re never allowed home until you’ve had a wee. I managed all this pretty quickly; I felt fine considering I was missing a chunk of my thigh/groin area and even hobbling to the toilet didn’t seem too painful.  By half 4 I was ready to go, with a doggy bag full of dressings in hand.

And things have been okay since really, I was worried that the pain may have initially been masked by the painkillers they gave me in theatre, but even this morning and all through today it hasn’t really troubled me.  I’ve been told to lie down for a few days with my legs raised to help prevent bleeding, but there seems to be quite a bit soaking through the dressing, that’s about the only thing bothering me right now as I have to wait until Monday to get it changed and I already feel pretty manky.

I should probably mention that I didn’t get stitches in the end, because the surgeon felt the wound would need to drain, so I have an open wound underneath the padded ‘nappy’. I haven’t seen it yet, but when he marked it out it, the area was about the size of my thumb. It is packed with an absorbant tape which will also need removing and replacing on Monday, something I’m not really looking forward to but it has to be done and the sooner it starts healing, the sooner I can have a shower!


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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..


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It only happens from time to time, but today is one of those times – A bad day, when I feel like curling up in bed and waiting for tomorrow, even though the sun is shining outside.

It doesn’t help that it’s nearly that time of month again, as that makes everything worse inluding pain, moods and fatigue.  And today my pain is definitely worse, although nothing has changed to cause this; joints are generally aching, my left shoulder and elbow are sore, stiff and swollen to the point where moving them is a no-no; my mouth and tongue are rife with ulcers and then the Hidradenitis / Pilonidal problem seems to be flaring too, with a third site developing very similar to the one I’m having surgery on.

Which brings me to the second cause for feeling low.  I’d been feeling pretty okay about this surgery until a couple of days ago, when it suddenly hit me what it was I’d be going through – it isn’t a major operation but it is in a delicate area, so it will be a ‘leave your dignity on the doorstep’ situation. Obviously, I’m worried about the fact that it is probably going to hurt too, even though it should mean less pain in the longterm. Mainly though, I’m worried about complications. Things never seem to be straight forward for me; but I hope to God that this time they are, because I don’t want anything to get in the way of enjoying our New York trip.

For some reason, the fact that I have to be dropped off and can’t even be accompanied to the ward bothers me more than it has in the past too. I’ve had surgeries before and the procedure has always been the same, but it didn’t seem to bother me then – so why now? Maybe because it is a different hospital to the one I’m used to? I didn’t have the best of experiences last time I was treated ‘elsewhere’ after all.  Maybe I’m just feeling a bit more fragile than usual too; whatever the reason, I hope I get over it by Friday.

Anyway, I’m going to try what I usually do when I feel down and that’s wallow in it for a few hours and then snap myself out of it; I’ll lie in the sun for a bit, paint my nails, listen to some music, watch a girly film, eat some chocolate… – anything to perk myself up – and hopefully tomorrow will be a better day.


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Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?


Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

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Not much to report on the personal front, apart from the fact that the hospital called me to postpone my Surgery until Friday 26th August.  I’m not sure if this is a good idea or not, since I want to heal in plenty of time for New York, plus I also have reservations about it being the day after my Orencia infusion.  I’d ring my consultant for advice but he is still on holiday, so I’ll have to see what the GP says. I also need to see what I do about the antibiotics too, since I will finish them over a week before the operation date now.

I finally decided to start working on the ‘Treatment’ section of the blog today. I hope to eventually cover all of the treatment options for Still’s Disease, with personal accounts of those that I have had experience with; I’d also invite anyone reading to share their own experiences of each drug in their individual comments section.

The first treatment I’ve put up is Naproxen, because that is often the first drug doctors prescribe when there are signs of joint pain and inflammation. Please let me know if you think I’ve missed anything out and keep watching for further treatments – I’ll try and post each time I update them.

Now I’m off to put my feet up and watch Season of the Witch on dvd; pyjamas at the ready!


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I had a phone call the other day to offer me a cancellation slot for my Hidradenitis surgery on Friday; I need at least a week’s course of antibiotics beforehand though, so couldn’t accept, but she told me to go for a pre-op assessment today anyway.

It took a while to go through my medical history and treatment list, then I had the usual BP and chest checks, followed by an ECG and then… another blood test.  I hadn’t had much notice so was only able to try a few of the tips I posted the other day; however, I asked the phlebotomist if she could take blood from somewhere other than my ‘infusion vein’ and after two attempts she managed to find another that will work for bloodtests but isn’t suitable for cannulation. So we managed to get enough blood and give my overused vein a break, phew!

My procedure is now booked for the 22nd August, which is pretty soon but at least gives me time to heal before our trip to New York. I am also relieved that someone is finally doing something about it as I’ve been putting up with this for over a year now and, as well as being sore, it is annoying to have to think about it all the time.  The problem is, I seem to have developed another swelling around the glands on the opposite side and a smaller one next to the first; I really hope that these are like earlier abscesses I experienced and heal themselves.

Unfortunately, the specialist feels that this is all down to being on immuno-suppressant drugs for so long and there’s not much I can do about that. I’ll just have to hope that with the antibiotics and surgery there’ll be no more infection left to reinfect and that it is curable.  I’ve been taking it all a bit too lightly, so maybe I should look into more thoroughly too; prevention is better than cure after all.

Off to see the GP again tomorrow to reassess pain relief and pick up the antibiotics.

Until then, good night.


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So, alongside the Still’s flare and all that comes with it, I have also had a (rather embarrassing) problem with chronic abscesses for the past year – one in my left groin (hidradenitis) and the other, descibed as a pilonidal sinus in what I shall call the ‘natal cleft’ – a polite way of saying butt crack.  This would usually suggest that I was a very sweaty and hairy person but, in my case, it seems to be down to the longterm steroid treatment, since I am neither sweaty nor hairy!

Anyway, I digress. After almost a year of putting up with these unpleasant and uncomfortable things and many, many courses of antibiotics, trips to A&E etc… my new GP said straight away that they wouldn’t disappear unless they were ‘laid open’ and he referred me to the surgeons, who I saw today.

He focussed on the hidradenitis, which gives me the most trouble, and said that I will need the whole section of infected/scarred skin cut out and healthy skin sewn back together.  I am not sure whether this will be under local or general anaesthetic.  Usually, the wimp in me would beg for a general as I quite like to be completely unaware; this time, however, I quite like the idea of getting it over and done with without having to stay on a ward. Chances are, I won’t be given a choice.   Either way, I have to take a course of antibiotics for two weeks beforehand to reduce the risk of further infection.

Something else to look forward to hey?


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My Google Alert kindly alerted me to this news article:  As if having Still’s Disease isn’t enough, this woman ended up with life threatening Pulmonary Hypertension too, and at the age of only 25.  She recently underwent a double lung transplant and I really hope she makes a complete recovery; sending lots of healing vibes her way.


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