Life with a Hidden Illness

 Life isn't always what it seems, sometimes someone you may have known for life may have something that you can't see. 

As you know from my other posts I have hidradenitis suppurativa, which is a chronic debilitating skin condition. 

Early October I had another operation to try and fix my perianal fistula which is caused by my hidradenitis suppurativa, during this operation I was diagnosed with perianal bowl disease which is a form of Crohn's Disease which is caused by my hidradenitis suppurativa.

What I had done was pretty painful and I have to go daily even now to have my wound packed, including going to Urgent Care on weekends, sometimes waiting up to four hours. 

 The would was 14 cm by 7 cm I think that gives you an idea of how big it was and still is now. 

I don't only suffer from that, I also have sinus tract infections, which is causing lots of pain, and it has reopened my wound more than once. The Sinus tract infections also affect the top of my pubic bone. I have five abscesses that hasn't ever closed up since they first appeared three years ago. 

They scab over in the middle of the night, and then as soon as I walk they burst, causing me immense pain and the smell of the pus that comes out is awful. 

I have recently been referred to Guys and St Thomas Hospital in London where they have a specialist HS unit. Where I had the most informative hospital appointment since my diagnosis. I have HS which is stage three, the worst stage sadly. 

They also found that HS is now on my breasts, which I have never had that before, It's always been on my groin. Apart from one small wound on my armpit which was the first wound I ever had, and it never came back there again. 

Normal appoints I have had at Watford General have been for twenty minutes for a quick look, new medication and next patient. 

I was at Guys for over three hours being examined, with blood tests and x-rays on the same day as my appointment. 

I have been approved for humira which is an injection that I will take weekly to help my immune system and my HS. This is the last medication for me, I have taken all the tablets I can possibly take and I hope this works. 

I am so pleased with my care from Guys and St Thomas, its been such a wonderful experience to have proper care and doctors that actually know the condition.

You may think how can a hospital appointment for a horrible condition be a wonderful experience. Well it's quite simple really, I have had horrible experiences at two local hospitals.

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My bad experiences at local hospitals

As I have said before I had an operation eighteen months ago, and I have to go daily for dressing changes, including weekends. At weekends the GP's are obviously closed, so I have to go to A&E or urgent care to have the dressings changed. 

I stay at my parent's house most weekends and had to go to Northwick Park Hospital and twice I had nurses say that they didn't want to treat me because they didn't want to catch my disease, asking me if it was an STD. I left feeling embarrassed, feeling like no one understood me. In the end I just spent the weekend thinking I'd rather bleed on my clothes and chairs than be treated like that. 

I then had the same experience at Watford General in November, literally told I shouldn't be here I was taking up a valuable space from someone who is really sick. When I showed her the letter from my GP nurse and the letter from my surgeon she shrugged and said I've never heard of this condition, just put a plaster on it. Then, when she looked at it, she said, urgh I don't want to catch this, I'm not touching you. I left in tears. 

I now literally have a panic attack when I have to attend the hospital at weekends in case I am treated with such disregard. 

There's no awareness for this condition at all in hospitals apart from in the dermatology department. In March this year I had a drain fitted to try and get rid of the infection inside, unfortunately the drain fell out, and I went to A&E to like what the district nurse and the letter from the surgeon suggested. 

I had a long wait which I expected but no one on duty had heard of HS, the surgeon who came to see me looked at me but had no idea what I had done, what the condition was and kept me waiting for hours, only to be told later at 5pm, I'd been there since 8am that no one knew my condition, go home and ring your surgeon on Monday morning. 

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My mental health

The last few months have really hit me hard, I feel like this wound will never heal its been nearly two years since the first operation on it, and I have felt like this is never going to heal, and I am due more operations to fix my sinus tracts. 

If I hadn't of handed in my notice after being told it would be best to give up work while recovering from these operations, (let's just say I'd still be off sick for eighteen months now, imagine going in everyday saying I need to leave at 10 today because I have a dressing change appointment, totally not going to happen). 

As an Early Years teacher, September to December has always been my favourite time to teach, the wonderful colours of autumn, getting to know the children, then moving into learning about festivals such as Diwali, Bonfire Night and then the big Christmas celebrations, I loved doing the Nativity with children, decorating the classroom, talking about Father Christmas, and the best thing the children loved doing was watching Christmas Adverts on YouTube and talking about them.  

It hit me this year, I really missed it, but I know my body, and it just can't do it any more.

How HS has affected me

Many people have asked me, how has this affected me, apart from having abscesses, how else does it affect me. 

I am always tired, no matter how many hours sleep I get. My body aches, my eyes feel heavy and I have no energy ever. 

But even though I am always tired, I struggle getting off to sleep, I literally can lie there and not sleep. Mostly because my wound begins to itch, my sinuses itch and my perianal bowl disease causes itching. 

I can't be very active, I have two sores on the side of my groin that causes them open as soon as I walk. There have been many occasions where I have been out shopping with my husband, and I've had to ask to sit down, as I have been in so much pain. 

Not only that, but my wounds leak, and if I don't wear black it looks like I have wet myself, and I leave my wet marks on seats, which is super embarrassing.

I literally don't want to leave my house unless I have to. I have been to friends houses and bled on her chair, I have been in cafés and bled on chairs and hotel bedrooms and left bloody messes. (Why are all hotels bedding white?)

 But one of the worst things is always being ill. Before a flare up, I get a temperature, and then I get a cold. A headache, a cough, a runny nose, I always used to think it was because I worked with children but when it carried on even after I left work. Guys told me it was because HS is an autoimmune disease and my immune system is non-existent. 

But the worst thing in the world for me is the smell. When my abscesses burst it has a horrible smell. Some of you may say well why don't you have a bath. Well sadly I have an open wound, I am not allowed a bath with any bubble bath, soap or anything like that in case it gets in the wound. So I am only allowed to wash in hot water and hibiscrub. Which hasn't got a smell, I honestly don't feel clean, and I can't wait to be told I can have a proper bath.

My hopes for the New Year

I hope that my wound heals enough, so I can have a proper bath with bubbles. 

I hope that Humira works for me, and it gives me a better quality of life.

To be able to go out more and actually enjoy being able to go out. 

A non HS one to really build up my card and gift business now I know its probably not likely I will be able to go back to teaching. 

I will start to blog daily when I start my Humira...

Penelope. x

 

 

 

 

Day two of hidradenitis suppurativa week - My job.

 How does this disease affect your life? It's a hard question to answer really because I have it better than most, I am alive, and I haven't had as many operations as others. But I have lost many things that I considered my passions. 

I have always wanted to work with children since I did work experience in year 10 at a private nursery and that set up what I always wanted to do in life. Look after children, children from birth to five. 

It was all I wanted to train in, and I did, and I had a long career in childcare from working in private nurseries, Tumble Tots, Childminder to working in a school. I've seen it all, done it all and loved every moment. 

At first, I could manage it, I managed it by taking painkillers, by ignoring it at times, if I pretended it wasn't there. When it wasn't diagnosed how could I do anything about it...

But about two years into my job at the school I worked at, I couldn't manage it any more without it affecting my day-to-day life at work. 

I had to have more days off work due to not being able to do my job mostly, which is of course running after and playing with the children. 

I would come home with sores, abscesses and quite honestly in a lot of pain. This was made worse when it was the time of the month. No matter what sanitary product I used, what make of product I used it irritates my skin, I will get lumps and bumps caused by the friction and by the irritation of wearing one. 

Nine times out of ten I would have to take the first couples of days off work during this time to try and stop wounds worsening or literally because I couldn't get out of bed. 

Along with my polycystic ovaries I was more out of work than in work. 

I finally met a dermatologist who cared about me, about my condition and noticed I had perianal tears and that this was most probably caused by Crohn's disease (this is still undiagnosed, but I am getting towards a diagnosis I hope...)

I had an MRI scan of my stomach, and they found fistulas in my stomach and after that I had to have colonoscopy where I was told I would need an operation to fix the perianal tears, and it was advised I give up work. 

At the time I thought it was a load of bullshit, why should I leave my job because of a small operation, I had a 12lb tumour removed from my womb and I could go back to work in twelve weeks, so this was a shock to be told I would have to leave.

But eighteen months after the operation I am still going to GP's and hospitals almost daily to have my dressings changed. The would is still 7 cm long and nearly 14 cm deep. So the surgeon was of course right to say to leave my job. 

I miss my profession immensely, I  miss working with children and running around like I used to. 

I miss playing cricket with them, and they're laughing at me because I didn't hit the ball. Not only that, but I miss running after javelins on sports day that the children threw on purpose just to get me to run after them. 

I miss organizing Nativity's and wearing a different Christmas jumper daily, I miss singing the Nativity songs around school from September annoying everyone else.

Above all I just miss the children, as someone who would love children and haven't been blessed with children yet, I treated every child I looked after like my own. I didn't care if they could read, write, recognize letters, I cared about them being happy, coming to school with a smile on their face. I cared about them. 

And it's been taken away from me. My friendships at work, my social life, my children, it was snatched away from me. 

 It was all I had trained for, all I wanted to be and a few sores, a few accesses took away my profession. 

But I am now designing, in 2011 while my hours were cut at Tumble Tots I found a hobby, card making. And you know what this past eighteen months is saved me, saved me from utter despair because I now make cards to take my mind off everything. 

I have started designing cards myself, using my Photoshop skills to try and design my own bits and I have started my own website, my Etsy shop and a shop to help crafters who have disabilities. 

I am hoping to turn this into a business, a proper business, so I can look after my health and have a profession I love again. But time will tell if I am successful. 

My website: www.pezzywezziesprezzies.co.uk

My Etsy shop: https://www.etsy.com/uk/shop/PezzyWezziesPrezzies?ref=simple-shop-header-name&listing_id=1046394909

consiouscrafties: https://www.consciouscrafties.com/crafties/pezzywezziesprezzies-store/

 

Diagnosis of Hidradenitis suppurativa

 In 2013 I started noticing sores on my butt. Red raw sores, but only periodically. Normally when it was the time of my month. 

It looked like nappy rash and was rather irritating so I went to the GP and was told I was allergic to sanitary products and I should only use cotton products. 

Well I didn't really notice a difference, only in my pocket and when your periods are as heavy as mine and your changing literally once every half an hour those bad boys mount up! 

So I carried on in pain and tried to just grin and bare it. But it got worse. 

I started getting scabs on the top of my pubic bone. Again went to GP I got told it was dry skin and eczema. I've had eczema all my life, I knew it wasn't, but again took the cream and went on my way. Did it work? Well no... 

Two years later I felt a lump in my armpit and instantly worried it could be cancer so went to the GP was told it was just a cyst but they would send me to the hospital to make sure. 

Luckily it wasn't cancer and it was a cyst. If it got any worse they would cut it out. 

But after a while it started to drain and smell, it smelt of infection. Again was told it was just eczema as it's summer and hot and to keep it clean. 

While all this was going on I noticed a pain and blood in the toilet bowl when opening my bowels. Off to the GP again, only this time a new one as I was married and moved. 

My diagnosis piles. Well I've never had a baby and I certainly haven't sat on a cold floor since primary school age. 

I took the medication and went on my merry way. But the problems persisted. 

My periods were awful I would literally swell looking like I was six months pregnant and asked daily if I was pregnant. And there would be no warning my period would come, it would start like a tap being turned on. 

Again I went to the GP told it was just my Polycystic overlies and get on with it. Well when your bleeding through your trousers going to your boss covered in blood and then asking yo go home for a shower and change then rush back to work, there is a problem. 

Turns out after going to the GP each week I got a referral to a gynaecologist and was diagnosed with a benign tumor. Fibroids and had an operation to remove it. 

I had a 12lb tumour in me for which they think was there years. The relief. The utter relief. I thought things would get better but alas... 

While going through all that I was still getting sores on my groin and armpits. It was beginning to affect the way I walked, worked and how much time I had to have off. 

Again went to the GP got told they didn't know what it was, it was an abscess take antibiotics. It was only a work colleague telling me to ring 111 that I did. 

I got an emergency appointment at an urgent care centre and I saw a wonderful doctor who put my mind at ease. Let's be honest does anyone like showing off their vagina and butt to a doctor. 

But she was so kind and she automatically said you have a condition called Hidradenitis suppurativa.

I had never heard of this condition. I was like what the hell is it? She told me to wait at my GP tomorrow and refuse to go until I was seen, again I had to have another day off work but it would be worth it to get answers. 

I saw the GP the next day and I got referred to a dermatologist. Within a month I got seen by the lovely Dr Bozi.

She told me it was Hidradenitis suppurativa and that I was in stage 2 of the condition. She told me it was an autoimmune disease and it was more common than most people think. 

I got put on antibiotics and given cream and special wash. Things were going well, I was still getting sores but I knew what it was and I could manage it. 

Then lockdown happened and my appointment got cancelled and I would have to be referred again. I could have cried and I know people had it worse during lockdown, I know friends who lost parents children I looked after lost parents but I felt like I was at square one again. 

One day I got a huge abscess right on my pubic bone and it was smelly and nasty and I had to ring in again to work and not go in. Purely because of the smell, imagine that conversation with the boss! 

Again phoned the GP but of course they weren't seeing anyone was told to send a photo to them. Well that was some photoshoot let me tell you, eat your heart out Madonna! 

GP prescribed me antibiotics and told me to just get on with it during COVID. So I did.

Again a few weeks later I noticed a pain when passing urine so again I had a look and saw two massive cysts either side. Tears were shed and and again rang up the GP hiding in my store cupboard at work and I broke down in tears. 

I told them I was in so much pain. I knew my condition but I needed a specialist. Who knew the condition. Guess what? I found a doctor who listened to me, I was seen that afternoon. 

Again another person seeing me and again I was put at ease. She told me she had sympathy for me and she would refer me straight away. 

And she did. This time it was with DR Brown and I can't tell you how much this woman. She's been my lifesaver. 

Again I had to strip off and she had a good poke at me. Trust me it's not pretty, it's not nice and it's embarrassing but guess what it's worth it. 

When no one else can see your condition, people begin to think your making it up. 

She told me it was Hidradenitis suppurativa and it was now stage 3 and that I had the hormonal one. It's connected to the polycystic ovaries.

She then asked me about my bowel movements and if I had problems. I told her in the last year I struggle watching football if Liverpool are playing I can't stop going toilet. She said straight away have you been tested for Crohn's disease. 

She then told me turn over and she examined my butt. Guess what? Those piles I was diagnosed with were actually cysts of Hidradenitis suppurativa. And I have to pass my movements out through the two cysts. 

She also saw two perianal tears and that she was going to refer me to a rectal surgeon to make sure her diagnosis was right. 

I cried tears of relief. I was believed all this time I was told it was nothing. I was put on proper antibiotics and was sent on my way. 

This time I saw specialists and I had colonoscopy and they couldn't see evidence of Crohn's disease. But he saw evidence of fistulas and of course these pesky cysts. 

18 months ago I had to go in for surgery to remove the perianal tears. And trust me it isn't pretty. 

I had to give up my job as they told me recovery was slow! Slow I feel like my arse has been healing as long as the Queen has been on the throne. 

What has recovery been like? I have to go to hospital daily for dressing changes. What does that entail. Well it entails them putting bandages inside the wound to stop it seeping on my clothes and bed. It fails 😂. Also to stop infections. 

I also have not been able to bath in that time with any form of bubble bath. Why? Well the bubble bath would have chemicals in it which will go up in the open wound 🙄. Hot water for me 😂

After a year I started getting annoyed by it taking so long. As was Dr Brown who wrote to the surgeon along with my GP nurses. Who by the way are angels anyone who has seen my butt for the past year are angels. 

So I went in to surgery to have a drain fitted. And after a year of the operation I was still losing 20ml of blood a day and I got new people to see my butt. The district nurses who came to empty the drain 🤣

But my bad luck continued as the drain came out and I spent hours at A&E only to be told they couldn't refit it 😂. I wasn't laughing at the time, trust me. 

Now I've got a tens machine fitted to try and help heal the wound. 

Dr brown still thinks I have Crohn's disease and I still can't watch football without being ill. 

I am also fighting a sinus tract infection down there. That's not pretty let me tell you. Waiting to see Dr Brown, waiting to see if I need new antibiotics or more surgery. 

So what do I feel during a flare up? I'm tired, I'm exhausted, I can't do much no matter how much sleep. 

I also get an awful cold. I feel weak, my throat hurts and I feel run down. Then before you know it I have a new sore for the collection. 

Why am I writing this? Well the week of the 7th of June is Hidradenitis suppurativa week... I want people to understand the condition. 

During the week before and during I will post more about the condition. 

Some pictures, if you don't want to it's okay: