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
