HEALTH: Ulcerative Colitis – my recent diagnosis/experience

Regular visitors to my website may already be aware of my ongoing health battles with my hyperhidrosis and my rather well documented experiences with depression, anxiety and the medication Citalopram.

On my Citalopram post, especially, the reaction to it has been phenomenal, and it’s absolutely had the desired result – my search terms show that a lot of people are finding the site in their first week on the tablet, which was my ultimate aim. Feedback has been amazing, and almost makes the whole ordeal worthwhile.

With these previous open posts in mind, and having seen the benefit that they can do, I’ve decided to do another one, albeit a little more reluctantly, as last week I was diagnosed with an all together more concerning, and chronic/life long condition – Ulcerative Colitis.

Ulcerative Colitis (UC) is not a condition that I’m expecting many people to have heard of – it’s apparently pretty rare. It falls under the heading ‘Inflammatory Bowel Disease’ (IBD) and most definitely is not to be confused with IBS, which is an all together less serious/unrelated condition.
Screen Shot 2013-08-04 at 11.04.46If you follow THIS LINK through to the Crohn’s and Colitus UK website, you can find out some more information on what IBD actually is, and the landing page provides a fantastic resource for anyone interested in knowing more about the condition.

If you’re not squeamish, I’d suggest sticking UC in to Google images so you can get a rough idea of exactly how much this tears up your insides – a picture always speaks a thousand words, and all that!

Now, if I thought that talking openly about my mental health was a big challenge, as it was pretty personal, talking about your bowel is, frankly, even more personal, humiliating and difficult.

I’d had symptoms for about 18 months, and was stupid enough not to go and get them checked out, despite a massive drive last year highlighting the concerns of Bowel Cancer (which, fortunately, I don’t have) – and so I only went to see my GP at the start of July.

I’m very lucky in that I have such a fantastic GP. I’ve always been lucky enough to get a referral almost immediately, and with this latest problem, I found myself fast tracked/booked in for a sigmoidoscopy (yes, that’s a camera up the bum to you, and, well, me!!) within a few weeks.

The whole process of the sigmoidoscopy was pretty unnerving. The procedure itself was actually a zillion times less of an issue as I’d built it up to be in my head, and ultimately, it proved very interesting to watch everything happening on the monitor. The downside, though, is that it’s pretty humiliating – you have to wear hospital issue shorts that have no bum in them, and a hospital gown – if you’ve got any sense of dignity, you’re going to need to suck it up and deal with it. If the awful hospital clothes don’t take it, then the fact that you have three people looking up your bum, whilst discussing Andy Murray’s chances at Wimbledon as they rummage around up there, frankly, will. The sooner your dignity shrivels up and dies, the easier you’re going to find it, in my opinion. Hospital staff will absolutely realise how you’re feeling, though, and the team who performed my examination were fantastic at putting me at ease, and it was just another day at the office for them. I think they were also just relived to have someone in who wasn’t over 60 (everyone else on the ward was!).

The 'small' camera / sigmoidoscope - as a gay man, even I was concerned!!!! :P
The ‘small’ camera / sigmoidoscope – as a gay man, even I was concerned!!!! 😛

Whilst fascinating, the camera test did, unfortunately, reveal some extensive scarring to the lower part of my colon. The difference between the healthy tissue and the scarred tissue was pretty stark and it was pretty shocking to see it so clearly in front of me. They took some biopsies and then they told me that they’d be making a referral to a consultant in due course.

The week after, the hospital got in touch and told me that they were going to bring my consultant appointment forward, after he’d been through my test results, and apparently wanted to see me urgently, as opposed to having me wait four weeks. I’m not going to lie, this was terrifying! All sorts of things were going through mine (and my employer’s) head.

It was with a massive sense of dread that I went back to the hospital last Friday (26th July 2013) and, after a little wait, received my diagnosis of UC. To be fair, I was expecting it, having researched online, but I was almost relieved to have that diagnosis, as I’d already researched it, and that cancer fear was more than playing at the back of my mind after having seen the biopsy results prompt such a fast reaction from the hospital.

Even though I was expecting it, the 90 minutes that I was at the hospital absolutely passed through as a blur. After my appointment, I came out with so much paperwork – I had to arrange for blood tests, start on medication, arrange more tests with the endoscopy unit, book my follow-up appointment with the consultant, and then I got collared in to a presentation by a research graduate who wanted to introduce me to his (albeit fantastic) online resource to help with managing IBD. He was especially ‘excited’ as they’d not had a new diagnosis during the time that he’d been there – a few months – and so I was something of a dream for them I think.

I’m going back for a full on colonoscopy to confirm the extent of the diagnosis at the end of August, and will have to be sedated for it. I’m lucky that it’s just before the Bank Holiday weekend, so I can recover over a few days.

That the condition is chronic, and potentially life changing, didn’t really hit me until I got home that evening. There’s no cure for it, and the best that I can hope to do is to limit the effects of it, by taking my medication every evening for the rest of my life. I’m so very very fortunate, in that I have this condition at the proctitis stage, there are many many people out there who have landed at a more advanced stage and are unable to live anything close to a normal life with this condition – and I wouldn’t even dream of comparing my situation to theirs.

Whilst there’s no direct evidence that it will automatically get worse, general consensus appears to be that ‘we just don’t know’ and that it’s a very changeable and personal condition. Ultimate end-game with this, though I am miles away from it, is that I could end up losing my colon and having to use a bag or internal pouch. In that respect, the end result is the same as bowel cancer – you have to lose the colon to live properly. I’ve now got to live with that over my head for the rest of my life, and also the knowledge that I’ve just upped my likelihood of bowel cancer quite a lot. I’m now committed to a lifetime of having cameras up my bum, and the indignity of having to talk about my bowel to friends and future employers, as it is something of a disability, and something that I’m finding often needs explaining properly in quite graphic detail.

Speaking of it being classed as a disability, I now qualify for one of those RADAR keys, and mine arrived yesterday – absolutely chuft to have one, as it will really help me out – well, there has to be some benefit to all of this!

All that said, I in no way see myself as disabled, and wouldn’t even dare to class myself as such – there are people out there who suffer with things that are genuinely a lot worse, and I wouldn’t want to moan about my lot under that banner, when there’s much more suffering out there.

Unfortunately, all of this new UC stuff has really affected my mood and my anxiety/depression issues. The last few days, I’ve been feeling incredibly low. I’m so fed up, as it feels like everything that I’ve worked for over the last year to get to where I am today has just been wiped clean – I feel even worse than before, and all of the old symptoms have come racing right back to me. I have an appointment with my doctor in a few weeks, and I’m going to mention it to him then, but I’m not going to lie, it’s a real consuming struggle at the moment.

Oh look... I'm still the same person that I was before!
Oh look… I’m still the same person that I was before!

Out of all this, the only thing that I do ask is that you please don’t feel sorry for me, or see me in any different light. You’ll notice from sites like Twitter etc, that I post very openly about my depression and other ailments – I don’t shy away from them, I’m just that sort of person. Everyone has their own stuff to manage, and it all deserves equal weighting, and so my issues are no different to those faced by any other person – just I seem to like discussing them with a bunch of strangers!!! 😉

It’s my 28th birthday on Thursday (yes, it’s another Amazon Wish List plug, haha! 😉 ) so it’s really helping having something positive to focus upon. I’m off to Bristol to see Max’s family, which will be nice, and so, if nothing else, that forces me to get out and about and not let the depression completely overwhelm me.

So, there you have it – this is where my life’s at for the moment. Not even 28 yet, and already large parts are starting to break off. Pity that I didn’t come with a warranty!!

Whilst it may seem that I am whining, what I really want to do is to do my usual thing, and encourage openness surrounding the subject of depression, anxiety and UC (which affects mainly younger people, such as teenagers) – it’s definitely hard to talk about such experiences, but sharing them really does help, if you feel able to. Perhaps people can relate to the same things that I am currently feeling, and it will really help you to feel less abnormal or alone.

At the moment, I am much more angry at the fact that, as a working adult living in England, I am going to have to pay prescription charges every month for the rest of my life, despite having a chronic condition. The NHS system is very clear on the named chronic diseases that it covers for free prescriptions, and shockingly, IBD (and other massive diseases, such as CF, which my little nephew suffers from) are NOT on that list. I’m forced in to buying a pre-payment certificate, but I am genuinely shocked that the NHS system in England has just sold me up the swanny for happening to be someone who contributes directly to society and who refuses to be beaten in to seclusion by being diagnosed with a chronic condition. Absolutely disgusted, and a letter is on the way to my local MP, Hazel Blears, to ask her if she can bring this up at some point on my behalf.

What I would really like is for anyone who has been touched by this story to consider donating just a small amount (even £1) to the Crohn’s and Colitis UK charity via JustGiving.  

If you are able and kind enough to donate, please do it in my name and credit http://garidavies.me.uk – (do let me know in the Comments section below too, please) – I hope to reach out and share this page with as many people as possible.

Incidentally, and on a lighter note – this post WAS going to be called ‘HEALTH: Ulcerative Colitis – now the shit has really hit the fan!’ – but I thought that was a step too far, even for my twisted sense of humour, ha!

Finally, I’d like to finish this post with these two clips from YouTube (from the same guy) – the song made me laugh, and the spoken word video actually makes a LOT of sense – well worth investing ten minutes of your time in, whether you’re a sufferer of IBD or not.

Keep happy, and I’d love to hear other experiences from others who are battling with the same things that I am – it’s always an inspiration to me to see other people step forward and share their stories – makes it all worth it.

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UPDATE: 28 September 2013 – A Tax on Chronic Illness – Prescription Charges in England.

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About Gari

Thirty-Two year old northern lad; living out in the Peak District and rediscovering life after having had a brain tumour.

18 Responses

  1. Fascinating and honest blog Gari, great stuff. I have a friend with Crohn’s disease who has found a superb medication that means he can more or less forget about it now. I wish you the best of luck with symptoms-maintenance, and I’m sure your blog will have helped a lot of fellow sufferers. Onwards and upwards! 🙂

    Like

  2. Your courage and positivity are really impressive in this candid and personal post Gari.
    My hope for you is that the enjoyment of music theatre keeps you going at difficult times, or least makes these times a little easier.
    Take care of yourself,
    Simon xx

    Like

  3. Mark Lewis

    I deliberately haven’t mentioned this really because you’ve said that you don’t want sympathy, and you don’t want people to take pity on you, but I think I should acknowledge it somehow so I think here is most appropriate.

    This sounds like an incredible thing to adapt to, and the fact you’ve mainly stayed positive throughout the whole thing is really good.
    Sharing your experience in such detail must be so helpful to other people with similar conditions who stumble across it, but it can’t be easy to divulge that much information when it’s quite a sensitive topic.

    I’m so proud of you and your bravery and I hope everything goes as well as it can do under the circumstances and that it doesn’t change your day to day life too much.

    Donating to the cause is on the agenda, but September is annual renewal of everything under the sun so once it’s all out the way I’ll put a little something something towards it.

    Like

  4. Steve

    Hi,Gari,

    just found this, hope you are well at this time.

    I think that if it states you have a chronic medical disorder, then you should get free prescriptions.

    i was diagnosed in November 2007 with chronic ulcerative colitis.
    Then the cocktail of various medication and many hospital visit`s started until 2011. And i can say now that i have not had any flare up`s or hospital visit`s for u/c in the last 3 years.
    I think that was because the origonal consultant had left and a new consultant was left to sort out his mess.The new consultant was not a happy bunny when i saw him, i won`t repeat what he said but, he was extremely angry.

    The meds i am now on are Tioguanine, citalopram and Pentasa
    Steve

    Like

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