What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

IBD - Psoriasis - Steroid cream - Rosacea

I don’t consider myself to be a very vain person, not since I’ve been an ‘adult’ at least. You notice I say ‘adult’ in inverted comas, as I’m still pretty sure I’m not getting this whole ‘adult’ (there it is again look), thing quite right. I suspect we’re all just wingin’ it really, just no one really wants to say how confused they are about the whole adult situation.

Anyway, back to the original matter! Vanity – I don’t think it’s something I suffer from, I guess mainly because I don’t consider myself to be that attractive, but you get used to your own face don’t you? I was at least, comfortable with mine, after all the bleaching of facial hair and keeping the eyebrows in check routine has taken place, OBVIOUSLY.

It turns out that if you make my ‘acceptable’ face any more unattractive then I do, in fact have a sudden attack of the ‘fuck me, I am a monster’ collywobbles.

If you’re not interested in me whining and a million pictures of my dodgy face then I suggest you STOP RIGHT HERE.

At the end of November a psoriasis patch appeared on my chin. “No matter, I am stocked up on Diprobase, I’ll soon shift it” I thought.

So I’ve been slathering this little patch of psoriasis for a week and it’s not doing anything so I dig out the 0.5mg of Hydrocortisone cream I had for it from the GP last time it flared up and I buy scent free soap.

A few weeks later and by now I have tried:
Hydrocortisone 0.5mg
E45 wash & E45 cream
Emollient wash & cream
1mg Hydrocortisone cream

But it’s no longer just dry, it’s red, lumpy and itchy and all I can do is keep it moist so the skin doesn’t thicken and become scaly -.-

I try to get a GP appointment whilst I’m off work over Christmas period but apparently, so does the rest of the population! So I try the Dovobet cream I have been told previously is too strong my face.

I finally get a GP appointment early January, but by now I have lots of little red spots spreading over to the other side of my chin, plus angry patches at the side of my nose, and if I am completely honest, I am feeling a little bit pissy about it.
I tell the GP what I have tried already and am prescribed Fucidin cream, which is antibacterial + steroid cream and I am told to come back in a few days if it hasn’t worked as it might be worth referring me to a dermatologist.
It doesn’t help, so I am prescribed Fucibet cream which is antibacterial + a different steroid (the same one that is in Dovobet), and I am told to come back in a few days if it hasn’t worked and that I will be referred to a dermatologist. I also begin smothering my face in Vaseline in an attempt to stop it drying out, which also doesn’t work.

The next time I am prescribed Nizoral, which is an anti-fungal cream and am told to come back in a few days if it hasn’t worked and that I will be referred to a dermatologist (noticing a theme here?).

Now there’s a bigger issue and my pee looks like Ribena so I have to go to the GP with a UTI, and I am not allowed to discuss more than one issue during an appointment. The UTI, turns kidney infection which completely wipes me out for a few days and I really don’t have the energy to visit them about my face during this time, and when I finally do have the energy, I still have a kidney infection and need more antibiotics so that’s the content of that appointment. Fucks sake!

I finally make it back to the doctors just over a week after being prescribed the Nizoral and am given Metronidazole antibiotics, but by now the patches near my nose and the patch (which now completely covers my chin) are joining together via a series of spots. I ask for a referral to a dermatologist as it’s clear that the doctors don’t know what it is or how to treat it, and I haven’t once seen the same GP, or nurse prescriber about it so they don’t know how fast it’s spreading. 

I’m sure you can understand that by now I am feeling fuck ugly, majorly frustrated and not wanting to leave the house. I mean seriously! Look at my shitting face!

I begin researching what it could be, as it seems clear to me that this is not the standard Psoriasis that I usually have. It looks like it is something called Rosacea - pronounced rose (like the wine) sha.

It’s constantly getting worse, it’s red, it’s bumpy, it’s sore, it burns, it’s dry and it has little white headed spots dotted around. A dry patch appears between my eyebrows (see picture above, I hadn’t actually noticed then as I was too concerned with the bottom half of my face), and I quickly tackle it with the steroid cream, but it doesn’t help, the next day, that is also beginning to spread and I now have a lump under my chin which is sore and tender to touch.

I am now at a point where I completely hate my face, I don’t want to go outside, I can’t sleep at night because of the burning and the itching and I am dreading what I will be faced with the next day when I wake up, and when I do wake up, I look in the mirror and I cry about it because lo and behold,,, I’m even fucking uglier! I read that ACV can help get things under control, and by now I am desperate so will try any home remedy I can find.

The referral letter comes from the dermatologist and I am to book my own appointment by phone or online, but it’s Saturday so I opt for online. There are no appointments available so the request is sent on to the hospital and they will send me one through the post, but 92% of patients wait 18 weeks. 18 weeks?! WTF…. This is also the day that my skin begins peeling off. I go to bed coated in steroid cream, hoping it will at least ease the burning. It doesn’t.

The waiting time for a dermatology appointment has tipped me over the edge and all I can do is lay awake and cry with my burning red face. I decide I WILL be going back to the GP, and that will is reinforced when I wake up Monday morning to find it is trailing up my forehead and ALL OVER my cheeks!

Metronidazole is not one of the medications that is used to treat Rosacea, which is what I am sure it is, and I am pissed off that none of the appointments so far has seen any of the doctors or prescribers even look at my face properly.

The man I see is a complete cock. He talks to me like an idiot and tells me that antibiotics are a long term thing and I end up shouting and then crying whilst explaining, no one has even bothered to try and identify what it even is to actually treat it properly. What I think it is will not respond to those antibiotics no matter how long I am on them and waiting 18 weeks to see an expert is not good enough because I fucking hate my face and I do not want to leave the house! He is nicer to me after my snot fest and makes me an appointment with the only GP at my surgery that actually knows anything about skin for the next day. I can’t help but wonder, why did someone not just do this before??

I research some more when I get home, and on one of my ‘I hate my face’ Facebook posts, I am asked if I have looked at Perioral Dermatitis. I look at this, and only then do I come across the variant of perioral dermatitis, STEROID INDUCED Rosacea! It is a light bulb moment! I jump out of bed to wash the steroid cream off my face! I inspect it in the mirror and I look at how far it has spread and I realise that every time there has been a new dry patch of skin, I have put the steroid cream on it, and THEN it has spread. So, I know what it is, now I just have to get the doctor to agree with me!

I take notes with me to the doctor’s appointment, including info about the condition and how it presents itself, and a list of medications used to treat it. I WIN. I get the right antibiotics, I buy more E45 to help soothe my peeling face and I stop using the steroid cream. I am aware that stopping the steroid cream is actually going to cause it to get worse before it gets better so I have arranged to work from home. I know it could be several weeks or even months before it actually goes away and I honestly just want the ground to swallow me!

As suspected, my face becomes even angrier. Where there were spots of red there is now just whole big blobs of red, and the spots start tracking towards my eyes from the bottom and from the top, even appearing on my eyelids. My top lip, which was previously OK, becomes covered too. I have also gained a second tender and sore lump under my chin, right next to the first one, which I can only assume are glands, frustrated at fighting off infection?

I am NOT going outside, I am not even talking to people. I stop checking Facebook and I hate even putting the TV on because the pretty people in it, with their perfect faces, just PISS. ME. OFF. I find myself only willing to watch Myth Busters, starring two below average looking males.

I set about applying more ACV to my face, as my chin (where I tested it previously), whilst still red is actually less red, less bumpy and there are no little white papules on it so it feels much smoother. I don’t expect after ones skin has peeled off that it would be normal skin colour straight away, but it’s definitely heading in the right direction. I put it on every tiny spot and patch and the worst bits by nose scab pretty quickly. I can’t move my nose without extreme discomfort for a good few days but slowly, the infected skin begins to come away. The less aggravated bits just dry and peel away with no scabbing, but it happens gradually so every few hours I am peeling and rubbing dry skin off everywhere, but by now it has stopped spreading so I know this is the worst it’s going to get. The tender lumps under my chin disappear, I can only assume that this is a good sign.

My skin continues to flake and peel but I have routine now so am dealing with it the best I can. By dealing with it, I obviously mean I am crying multiple times a day between attempting to rectify my face. I am bathing every day, and soaking my face with a soft flannel whilst laid in the bath (which has oats in by the way – another home remedy), I am washing my face multiple times a day whenever the itching gets really irritating, again the water each time I wash my face has oats in. I am applying what can only be described as ‘oat scum’ face masks in the morning and at night whilst draining the bath so I can shower off the breakfast scented water, and I am only using a sensitive skin face wash and applying E45 a million times a day. When I am in the bath after soaking my face with the oaty flannel, I am able to rub off a fair bit of dead skin without any discomfort so the routine to try to improve things is time consuming but it’s working SLOWLY so I stick with it.

The skin on my cheeks and my nose is slowly getting smoother but under my jawline and around my eyes, where it’s too sore to rub off skin is still bumpy and more red than everywhere else. Persistent little bastard, but I refuse to give up! I am too fucking ugly to give up.

Something finally happens around my eyes! Unfortunately, this is what happens…
The dry skin has thickened and become somewhat stiff, meaning I can’t actually open my eyes properly. Still, I will not give up! *whispers* please let me give up

I man up and return to working in the office on Monday, after having 3 days the previous week working from bed, in the dark, which is exactly where I want to stay!

It’s tiring and it’s pretty boring having to stick with the routine every day but I know I need to. Slowly things are clearing though. The skin around my eyes appears stubborn and is really pissing me off. If I try to cover up with mineral powder or anything it just settles in the crease and extenuates the lumpy appearance and I genuinely look like an old lady!
I had cancelled plans to travel to London for a friends 50th Birthday Party because there was literally nothing I could do to make my face more presentable, but as things are slowly calming down I decide that I should man up and go. I attack my face multiple times a day with the ACV as it seems to be the only thing that actually works, but by the time I go to London, I’m not quite fixed… The night before I try multiple methods of applying makeup, but each method has the same result – old lady eyes!
I am disgruntled to say the least… I shower in the morning before travelling to London so that I can wash as soon as I get there and keep applying moisturiser in an attempt to soften the skin around my eyes and stop the skin on my cheeks becoming flaky when I put makeup on.

When the time comes to actually apply makeup I am shit scared in case it goes wrong, because there is NO TIME to wash and re-apply a million layers of moisturiser. I can’t cover the patches of different coloured skin as well as I had hoped because the thicker I apply the mineral powder, the more likely it is my face will dry out and start to show flaky skin.

To be honest, it probably goes as well as it could have. I don’t like it, I am not comfortable going to a black tie event with my face like it, I want to sit in the darkest corner possible, I wear a ‘hide me in the background’ dress, put shimmery shit around my eyes so you can’t see the little lumps on my eyelids as prominently and I curl my hair hoping it will distract from my face and pray no-one notices me.
To my irritation, it’s now 3 days after the party and the creases and the dryness and the lumpy eyelids have pretty much buggered off!

Don’t get me wrong, I am not blind, I KNOW that my skin tone is very un-even but I have been burning my face off with vinegar so what do you expect? If needed I can throw on a little mineral powder to even it out a bit, but to be fair I probably won’t because I’m not a fan of makeup.

It is safe to say that steroid cream will never again touch my face, nor will I ever take for granted my ‘acceptable’ face!

I feel a bit better, I will be joining the online world again very soon – thanks for being patient with me!

For the stages of ugly – fuck ugly – you really shouldn’t be allowed outside – fuck ugly – ugly – becoming acceptable, see below xxx

The beginning of the spread (Feb 21st)

Angry after I stopped using steroid cream (Feb 25th)
My chin and between my eyebrows has peeled and are much less bumpy and angry (Feb 26th)

9 days after it was at its worst, and it’s mainly just around my eyes (March 6th)

The day before the party – fucking eye issues (March 10th)

Today (March 14th)

If I didn't have IBD, I probably wouldn't have Psoriasis. If I didn't have Psoarasis I wouldn't need steroid cream. If I didn't need steroid cream I wouldn't have steroid induced Rosacea.
So in short, IBD made me ugly.
Suddenly regretting complaining for all those years that Invisible Illness doesn't show up on your face to let people know you're ill...
Ladies and gents, let me introduce the 'not at all invisible' Extra Intestinal Manifestations of IBD!