#004 Figuring it out.

When I went into hospital, my weight went down to eight stone. Not cool for someone who is five foot six. My skin went to utter shit and my hair started falling out, strands cascading themselves everywhere I went, like a breadcrumb trail.

I arrived home with an appointment in a few months with a specialist and no clue, really, of what happened next. I diligently took my tablets and started to gain a little bit of weight, most notably in my cheeks when I developed moon face thanks to those lush steroids I was being given to treat the flare of UC that had seen me hospitalized. A few weeks past and the swelling in my foot and knee gradually went down, I was able to return to work and things went back to, well, normal.

Well, normal-ish.

I had to cut certain foods out of my diet completely. Sweetcorn, broccoli, cauliflower, spicy hot nandos and too much fibre were an instant no-go and I soon realised that eating is a bit of a trial and error. Some foods cause pain, some don’t. Some foods make me rush to the toilet and never want to eat them again, some are okay. It didn’t take me long to realise one thing though, and that was that UC is a pain in the arse. Quite literally.

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Fresh out of hospital, determined not to let this get me, May 2009.

There was one more thing though. I was, and still am, determined not to let the disease get the better of me. So that’s it, that’s us all up to date. Four years on and I am still figuring things out but I figured this blog might help me do that and it might help others who have just been diagnosed or are battling with this pretty retarded illness.

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#003 Ulcerative What?

There’s a song that will forever remind me of my stay in hospital. It’s ‘number one’ by Tinchy Stryder. I’m not a fan of his work nor of the vocal (in)capabilities of the N-Dubz that also appear on said track. Sadly, someone had abandoned a TV with the music channel on, playing all day, through hospital issue earphones. As bad as it sounds. And now, whenever I hear the first chords of this song, I am transported back to this time in my life.

My stay in hospital was, however, made better by several things. Visits from my family and a friend, the daily phone calls from my girlfriend, getting wheeled downstairs for some fresh air (I couldn’t walk and hadn’t been able to now for several weeks), the beautiful flowers I was sent and the lady in the bed across from me, Nora.

Nora had Crohn’s disease, something, which until now, I was pretty unfamiliar with. Now I was hearing of it a little bit too much for my liking. It was being banded about when I was being sent for tests (including but not limited to an ultrasound scan of my abdomen and one of my legs which, thankfully, ruled out Deep Vein Thombrosis and the dreaded Bum Camera which was inserted in to inspect my colon) and now I was curious.

Nora and I grew pretty close, spending most evenings with me wheeled across to her bedside where we would watch TV and read gossip magazines, pick outfits that we would wear the minute we were out of hospital (itchy gowns, flight socks and joggers were the current state of dress) and talk about food. There was a lot of talk about food. Nora was currently waiting to see if she was able to have surgery and she hadn’t eaten for weeks, was on a diet of build up shakes and tea. The future, it felt, was looking glum.

Since my late teens, blood tests had shown that I was lacking in Iron. I had tried, and failed, to take iron tablets. (They made me feel sick and made everything taste vile and also there was the dreaded black poo. I mean, what the hell?) It was put down to my lack of meat in diet and that had always been it. It was just one of those things.When I was admitted to hospital, however, my iron levels had dropped to a dangerously low number and I was given a blood transfusion. I was then prescribed with iron tablets, alongside the anti-biotics and ibuprofen they were pumping into me.

More time passed. I’m not sure how long, just that it felt like forever. I fell into a routine of six thirty wake ups, med rounds, breakfast, sponge bath, tests, waiting, reading, talking to Nora, phone calls with my girlfriend, more pills, visits, food, bed. Repeat.

Then came the Bum Camera results which showed one thing and that was that I didn’t have Crohn’s Disease. Cool. I did, however, have Ulcerative Colitis.

Ulcerative what?

I spent just over a week in hospital and was finally discharged with a prescription of Pentasa (a mesalamine to treat UC), Steroids (used in UC when a flare up is happening), Antibiotics and Iron tablets, and absolutely no idea what happened next.

ImageEvery day looked a lot like this.

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Mmm, crusty. Tranfusion hand.

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Amazing flowers and cards that brightened up my days (:

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Finally home!

#002 Funny Foot Disease

I wasn’t a particularly sickly child. I had the usual suspects, Measles, Chicken Pox, the common cold and the yearly Flu bug that circulated the playground at break time like clockwork every December. I led a pretty active life, dancing from the age of three and spending most of my time outside in various friend’s gardens playing football, climbing trees and cycling around the neighbourhood on my trusty red foldaway bike called Polo.

My parents decided to become vegetarian when I was around four years old after one of the first media scares on CJD and realising that they just didn’t feel like they needed to eat meat. I shrugged as this news was told to me at the dinner table one night and barely batted an eyelid as I became used to eating a meat free diet, one that I have continued on for the majority of my life (other than the times when out of sheer curiosity I have sampled the odd bacon sarnie and sausage roll, oh and there was that one time at Nando’s…)

I’d like to think then, that really, I led a pretty healthy childhood and this went on into my teens so when I first fell ill in early 2009, I felt a bit baffled and maybe disheartened because I couldn’t seem to find a reason why I had gotten so poorly. I’d gone from being a pretty healthy twenty something  (I say pretty because I had anaemia) to a not so healthy one.

What the fuck?

It was May 2009 when I was diagnosed with Ulcerative Colitis. I remember it well.

The year had started off on a downer when I fell ill with Bronchitis. And once I recovered from that, things got a whole lot worse. I had two separate counts of what could only be diagnosed (by myself) as Funny Foot Disease, where, inexplicably both of my ankles had swollen, then much to my joy, my knee had joined in. I couldn’t walk. I was in pain all the time. My appetite seemed to vanish and I was constantly tired. Iron tablets, I was told, take your iron tablets.

And then the sickness and diarrhoea started.

Mid April, I was returning from a trip up to Newcastle to see my girlfriend and put the tiredness I was feeling down to the excitement and exhaustion of my trip. I got home pretty late after missing my train and having to take a detour which involved a lengthy stint on Doncaster station eating breakfast flavoured crisps (thanks Walkers for that inexplicably weird moment) and then I just felt like utter rubbish. For a week, I was sick, going to the toilet every five minutes and unable to keep any food down. I was absolutely exhausted and when I stopped and thought about it, this had been building up for a while. I’d been losing weight without any explanation, feeling dizzy, tired and now, enough was enough. Then to top it all off, Funny Foot Disease returned. My right foot swollen, my knee swollen, I couldn’t walk again.

Admitting myself to hospital was like punching myself in the face with a wet fish. I did not want to do it. Yet I did. I hate hospitals, and I don’t know why. Other than a couple of operations on my eyes, I have not been admitted before and I haven’t had any particularly bad experiences.

I was given Codeine to relieve the pain. This made it worse and I spent a long night in A&E being sick, frustrated and uncomfortable. I was discharged early the next morning, something about possible Sclerosis and an appointment later in the week for an Endoscopy. Joy.

A day later I was back in hospital, my doctor having driven me back there, shocked that the hospital had even discharged me. After a long day on the clinical decisions unit (a small room with high ceilings, no windows and no TV which still haunts me to this day), I was finally admitted onto the gastro ward.

My hatred for hospitals was about to tenfold.

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Homeward bound and tired (but happy!) after a trip to Newcastle.

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Those pesky crips!

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Pre hair falling out, fuzzy socks hiding Funny Foot Disease!

TBC…

#001 What the hell is UC?

What the hell is UC?

UC (Ulcerative Colitis) is an IBD (Inflammatory Bowel Disease – not to be confused with Irritable Bowel Syndrome which is a whole different kettle of fish). It is a form of Colitis, a disease which affects the rectum and sometimes the colon (large intestine). Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. The condition varies as to how much of the colon is affected.

UC has similarities to another form of IBD, Crohn’s Disease and is known as an ‘intermittent disease’ – periods of symptoms (known as flare ups) followed by periods of time that are relatively symptom-free.

More, detailed information can be found here, on the NACC website.

The main thing with UC is that everyone living with it is completely different. From symptoms to severity to what can ease flare ups and what medications work best, it changes for each individual, there is no set way to control it and it is a chronic condition.

This blog is about my journey through life living with UC, the ups, the downs and the ways I cope (or don’t!) on a day to day basis.