Guest Writer Helen

I was diagnosed with Crohn's disease when I was 16 years old after developing severe stomach cramps and fatigue. I was very quickly offered surgery to remove the affected part of my bowel. I dropped out of college a year early as my absences were mounting up and my tutor could not understand my illness, as to her I was not visibly ill. The operation was a miracle. I soon slipped straight back into my teenage life with no consideration to what I had just been diagnosed with. 

For the next three years I turned a blind eye to my condition as the operation had left me symptom free. I began volunteering at a special needs school and soon developed my passion for working with people with learning disabilities. I began my training at Northumbria University as a Learning Disability Nurse in 2010 and everything began to fit into place. 

In September 2012 I began slowly losing weight. I love to go to the gym and be as active as I can, so I put my weight loss down to this. Over the next two month I started to develop other Crohn’s related symptoms however I put these off and tried to make other excuses for it. I knew there was a possibility my Crohn’s had returned however I thought that if I didn’t face it then things would somehow sort themselves out. Unfortunately this was not the case.

In March 2013 I came home from University extremely unwell hoping to get a quick answer from my doctor. By this time I had lost 2 stone, I was unable to get out of bed, my appetite was nonexistent, I wasn't sleeping due to horrendous stomach cramps and I had developed an anal fissure that left me in excruciating pain every time I went to the toilet (which was a lot.)

I went to see my GP and he referred me to an IBD consultant. Due to me being so unwell the consultant didn’t want to do any investigations until I had picked up. I was put on to steroids, vital milkshakes, a no fibre diet and a combination of vitamin boosting drugs.

For the next month I was very unwell, I seemed to get worse before I started to feel better. This left me feeling very down in the dumps. I’d left my university life that I loved! I’d moved away from my friends and my boyfriend and to top it all off I missed starting my final placement as a student nurse.  I was missing out on so much at university. It was a very difficult time for me, my weight had dropped to 7 stone, and none of my clothes fit me anymore. I felt so insecure.

My friends and boyfriend had never seen me suffer from my Crohn’s before so didn’t understand what was going on. I was getting constant texts and messages asking when I was coming back, which I was unable to give an answer to. It was difficult to explain to people I will be better when I’m better, I didn’t know when it would be or how long it would take but being bugged daily by everyone wasn’t helping. My relationships with my friends and boyfriend were going downhill and I was becoming more and more fed up of being ill. (I’m a rubbish patient.)  

After a month of steroids the consultant decided my symptoms had settled enough for him to do tests. For the next couple of weeks I underwent surgery to remove an abscess I had developed, I was poked, prodded and scanned until it was apparent my Crohn's disease had returned "all guns blazing."

Following my results I was put straight on to Azathioprine tablets daily and Infliximab infusions every couple of weeks.

The infusions seemed too good to be true, my stomach cramps were a lot better. It was still a couple of weeks before I started to feel slightly ‘normal’ again. 

On the 3^rd of May 2013 I moved back up to Newcastle. University and my Placement were very understanding. I was able to start my placement, just doing short shifts to get me back into a routine. I received financial support from University as initially I was travelling backwards and forwards between home and Newcastle to have my weekly blood tests and other treatments.
My first week back in Newcastle was terrible, I missed home so much. I cried my eyes out leaving my mum; she had been amazing, looking after me. She made sure I took my tablets, made my meals for me, took me to all my appointments and most importantly she understood! It was so hard remembering to take my tablets every day and having to explain to people why I couldn’t eat certain foods and why I had been so poorly. I just felt like no one understood.

 

Four months down the line I’m still learning about my Crohn’s, there’s so much to remember and come to terms with. I’ve learnt that if you don’t let people in and help them understand about Crohn’s disease then it’s a lonely road. Life is so much easier now my boyfriend, friends and colleagues have an insight to my illness.

My treatments have been amazing so far, I am back on a normal diet and not suffering from any symptoms. The only thing I struggle with is tiredness. I seem to be forever tired. I put this down to my determination to live a “normal” life. I do 13 hour shifts; go to the gym 4 times a week and I am as active as I can be. My friends understand that some days I just need to chill out and my boyfriend has come to terms with the fact it’s very unlikely I will watch a film without falling asleep half way through. It does worry me at times what the future may hold for my Crohn’s Disease, but I am confident that whatever comes my way I have the support of my family, boyfriend and friends to deal with it. I am determined that Crohn’s will not stop me living my life and following my dreams. 

Guest Writer - Jon

Honesty in IBD

My name is Jonathan Clarke and I have Ulcerative Colitis. Those are probably two of the most important things to know about who I am. Another important thing about me is that I have recently published a book about my experience with UC; but I'll come back to that. I've had to come an awfully long way to get the stage of writing about this illness.

Yup, that's me!

I was first diagnosed in 2010 while I was on my Gap Year. I had no inkling of the ramifications Colitis would have on my life at the time, and I had no clue about just how unwell this disease can make you. All I cared about really was that I was having regular, bloody diarrhoea, and I wanted it to stop.

If you had told me at the time that three years later I would be writing a blog about the disease, and wanting as many people as possible to read about it as possible, then I'd have thought you were on too many meds! I was embarrassed to the extent of mortified at the prospect of going to Uni and having to cope in secret with such an intrusive disease. I'd had a bad enough time breaching the subject with my parents.

Fast forward six months or so and I had already dropped out of Uni and was housebound. I had been forced to leave my new friends and girlfriend at the other end of the country and, the way I was then, it seemed like there was no end in sight. I was lonely, I was depressed, and I made it all worse by accepting these (all too common) traits of IBD. I would talk to my girlfriend on the phone about my trials and tribulations at home and it was she who finally suggested I write down all the things I was venting onto her. That night I opened my laptop and just started typing and I didn't stop for several hours and many thousands of words. I had composed a substantial diary of my time with UC including many anecdotes of my experience.

For much of that year Colitis dominated my life and I realised that I was going to have to get used to it. There was nothing to be gained from brooding or asking "why me?" and so I did what I should have done a year before, and opened up. I sent what I had written to my friends and family, most of whom I had avoided speaking to; simply because I had nothing nice to speak to them about. It was only once I started getting the responses that I realised what a disservice I had done to myself and those around me by choosing to be isolated.

This disease, as most people here will know, is hugely misunderstood. It's more than just a "bathroom illness" it is a systemic problem, and it was only by being honest with everyone that they could really appreciate that. And it's not just a physical disease, it's a psychological one too. The two sides of IBD are intrinsically linked however, and helping one side of the coin will translate to the other. I found it so frustrating that my consultants never asked me how I was coping mentally. It was only when I said that "today's been bad because I've had to leave the house" that any doctor treated me as patient, rather than a puzzle.

Colitis used to be something I would avoid talking about at all costs, but now I am frequently asked about, I am writing about it, and even joke about it. As I said at the start it's become part of who I am, not just a negative extension. My life improved drastically after doing something as simple as talking. My anxiety improved, my embarrassment was non-existent, and in fact I became as happy as I've ever been in my life.

Since then I have promoting my book to the wider public; and I have been shocked at just how frequent IBD is. You can read all the statistics you want, but until you start meeting fellow sufferers it doesn't mean anything real. I was amazed at how often upon hearing about my illness the response would be: "ah my Mum has that" or "my friend's been unwell too" and even "Me too!". The funny thing about the last one is how excited people are about meeting fellow sufferers. More often than not the reason is because they don't have to shy away from the gory details, they don't have to play down the extent of a flare up because they know I can relate and I know that what you see is not what you get with IBD. But from what I've learnt they shouldn't have to shy away from this with anyone.

It hasn't just been IBD sufferers who are keen to talk to me about my symptoms either. I regularly find people who have overlapping issues like bloody diarrhoea and who have not been diagnosed. Of course I urge these people to speak to their GP. If you can live with something it's all too easy to just accept it or even ignore it. Especially if the problem is an embarrassing one. But you will always find than being honest is never as daunting as you may think. They say that a problem shared is a problem halved; and they are right. When I got ill I thought that a problem shared is a problem spread; and of course I was wrong.

When I first wrote my book it was with the intention of spreading awareness through those 

closest to me. But the reason I continued writing (apart from the cathartic aspect) was because I had found out first-hand how important it is to spread awareness on a wider scale. I don't know if there are any more misunderstood or underestimated diseases out there, but there can't be many! Unless you live with it you will never fully understand, but reading about someone's personal experience is the next best thing.

The more honest you can be with those around you, the more comfortable your life will become; and that's a big factor in being healthy. And people will appreciate your honesty. 

There's no second guessing or wondering: they know.

If you want to find out what my experience was like then please visit this website: www.shituation.net where you can find out about me and my book and even order a copy for yourself or for a friend!

If you want to know more or have anything to ask at all then tweet me @Sh_thappensJC or find my own blog at jonclarke14.wordpress.com. And remember: talking helps. It may not stop you shitting; but it helps. 

Why Not Share Your Real Stories of Life with IBD?

There's nothing better than hearing from others who are going through the same thing as you - whether it's practical problems, emotions or worries. The same goes for living with IBD (Crohn's and Colitis). For that reason, we're featuring guest blogs from young people who have got something to tell you about their lives. So far we've heard from Vicky and Sadie and we've got others coming up for you.

Is there something you'd like to share with other IBDers? Perhaps you'd like to reassure someone who's just been diagnosed or are just going through the diagnosis process yourself and want to share your experiences? Maybe you've lived with IBD for some time now and would like to offer some guidance on the day-to-day things that help you? Or maybe you want to share a funny story?!

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                                     worried

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Whatever you'd like to share, we'd like to hear from you. Get in touch to find out more or to send in a guest blog post: crohnsandcolitisukpress@yahoo.co.uk  We will link back to your blog if you have one.