Was this fair? Was it fair to ”lead” on my colleagues?  Was it fair for me to be there?  Stupid questions went through my mind all day.

At least if I’m at work, I can’t be accused of having more time off. Does it matter that I don’t get much work done? From a work point of view, having me there working at a 10% capacity is better than not at all. This isn’t great for me though. As a chronic sufferer, I force myself into work a lot, more than I probably should. We all do; we may feel pants, but we’re capable of dragging ourselves into the office just to please our bosses and colleagues.

On the second day I couldn’t make it to work. I was hurting too much and hadn’t slept well at all. I think it was acceptable to take a day off. I spent most of the day on the sofa in a kind of warm squishy haze after taking strong painkillers. There was no way I could have worked feeling like this. I was much better suited to sitting on the sofa watching rubbish daytime TV and films.

When the pain begins to die down though, you become exhausted. At times I was too tired to chew. I literally struggled to move my mouth up and down. It was so bad I struggled to eat a piece of bread. It’s hard to explain this level of exhaustion to anyone, especially work. The exhaustive side of the disease is difficult to explain and quantify.

There are times when you are so lethargic that you cannot think, move or anything. That is how I am today. From the outside I may look lazy but I really have no energy. I’m writing this with difficulty. My eyes want to sleep and my arms are heavy. The keys feel too heavy to push down.

After that last paragraph I had to take a week out from writing this. My eyes got so sleepy and my mind so cloudy that I had to give up. I have taken it easy and relaxed; although I did make myself go back to work after 2 days off.

Returning to work was difficult as people always ask how you are. I try to be truthful by saying, “better than I was”. I guess that statement is true, but it doesn’t mean I’m fixed or cured, it just means I’m nearly good enough to work. “Better than I was” means people chuckle and then leave you alone. I soldier on through the deceit. I like to pretend I’m ok. I probably do this to attempt to fool myself more than anyone.

I have to be pretty general when I explain why I was sick. I can’t say I was too tired. I have to say my Crohn’s was playing up. This results in a bored look from the person questioning me, so bored in fact that they just leave me alone.  If I say I was too exhausted to work, they would respond by telling me how they are a bit sleepy. How can I explain that this is not how I feel? I’m literally exhausted. Too tired to think or even blink, I am not SLEEPY.

I struggled through the remainder of the week and made it to the weekend, where I recovered and built my energy levels back up.

I’m learning to feel less guilty about taking time off. Work took me on knowing about my illness. They knew I would require a few more days’ sick a year than most. I try to pull in some overtime to rectify my time off. In the past year I have got most of my projects in on time. However, you do hear some snide comments from management when they think no one is listening. Do I care? Yes a little, I am human. Will I let it get me down? No. There is no point.

Just before I go, I would like to share something with you. If you get tired at work, try not to drink caffeine as this can cause other problems with your bowels. Just get up from your desk or wherever you spend the majority of your working day and go into the toilet and just stand in there for 2 minutes. People are so used to us crohnies going in and out of that little room all day, that they do not find it weird. You can then take a 2 minute break without worrying someone is monitoring you. You can unwind in your natural home. Splash some cool water on your face or text your friend or loved one. It breaks up your day and gives you back 2 minutes. I find myself doing this nearly once an hour.

Stay well

Ben x

Twitter is an amazing way of talking directly to other sufferers without having to embarrassingly stand face to face. It is a pretty faceless medium and you can be honest about everything without fear. I quite regularly tweet about my bowel movements and will have a dozen or more replies from other IBD sufferers commenting on how their movements are on that day. It is all a bit odd at first but you soon learn to love them.

Twitter helps you realise that there are lots of people in the world who are suffering in a similar way to you. There is a whole community who all have something in common. A subject that we struggle to discuss with our loved ones due to nature of the subject. I am very lucky to have an understanding wife, circle of friends and family but it is still not quite the same as talking to someone who has been through a similar experience.

I believe it would also be a great way for my friends and family to talk to other observers. These are the people who are inadvertently affected by our IBD issues. They are the ones who have help us through the pain, emotions and embarrassments that IBD can bring. They do this with little complaint. They are affected and often go unnoticed. It can be physically and emotionally draining for them too. They are unable to remove the pain we suffer but are there for us no matter what.

Using the medium of Twitter I found a guy who is looking to create a short film/documentary on the subject of Ulcerative Colitis (UC). He has watched his mother suffer and has felt helpless at times.

He intends to create a 15 minute documentary in order to show how UC affects not only the sufferer but the people around the sufferer.

I offered him my assistance in any way he needed. I have a diary, here on the Internet that tells the story of my IBD life. I also present a hospital radio show in Leicester. So as well as my IBD story, I have offered him my services in trying to find other willing candidates who are willing to help. So please read the information below and contact Harry if you would like to help in any possible way. (also, why not Tweet me and we can talk about bowels! @mrawesomeben)

Stay well Ben x

My Colon, My Life and Me

Our Story

My name is Harry and I am making a documentary about Ulcerative Colitis, an illness that is certainly life changing and potentially life threatening. I will follow somebody who has recently been diagnosed with this condition and see their journey as they begin to understand and come to terms with what their future holds for them. I have a small production team that will be travelling around the UK in March 2012 to film this 15-minute documentary.

Most definitely life changing and potentially life threatening, we set out on a journey to discover how an idyllic lifestyle will change forever.

Making this Documentary

I have always been keen to make a documentary about Ulcerative Colitis because it is a subject very close to my heart and still remains a very important issue in my life. My mother, Tina, was diagnosed with the illness in 2003, when there was even less information about it around. My mother had an ostomy pouch for many years and I was bought up with helping her change it and looking after her. It has been such a big part of my life and it seems to be all I know, but as a family we have grown closer and we like to draw upon the positives rather than indulging ourselves in the negative impacts it has had. Therefore I wish to tell the story of David’s journey, because in my own special way – I’ve been on the same journey as him.

Get Involved If you want to be involved in this documentary and would like to share your experiences with us, please get in touch by either emailing or tweeting us.

Email: hjlawton@hotmail.co.uk      Twitter: @UC_Documentary

I have also become very rude and ignorant. This isn’t on purpose. Someone will talk to me and I will only be able to listen to them for 30 seconds. Any longer than that and I began to glaze over. This isn’t through boredom. I enjoy listening to people and respect what they have to say but my concentration levels have disappeared. I just can’t physically concentrate for long periods of time. I wasn’t sure I could link this to Crohn’s disease. How could a dodgy bowel affect how my brain works?

At my last consultation I mentioned these symptoms to my consultant. He asked some further questions then nodded his head and said it could be my B12 levels. He sent me off, with my little blood form, to the phlebotomist (Blood takers – not vampires). The last thing you need to hear when entering the phlebotomist’s waiting room is “Help, I need help”. A rather large man had completely passed out whilst having his blood taken. Luckily she managed to wedge him in the chair whilst she called for help. In this situation, I don’t think I’m supposed to help. So I didn’t. I sat down quietly and pretended to be oblivious to what was going on. Luckily for everyone, 4 nurses turned up and pulled curtains around the poor fella whilst they tried to wake him up. I was soon taken into a different room as I didn’t fancy having blood taken whilst they tried to bring an unconscious man back into reality.

My consultant had told me that they don’t check B12 levels unless requested, due to how much it can cost. This shocked me as this problem seems pretty common for people who have had surgery on the small bowel. Over the years quite a few people had told me to keep an eye on my B12 levels as they had suffered problems after their Ops.

B12 is very important for the brain and helps with memory and concentration as well as a few other vital roles. The wonderful world of Google tells us that B12 “plays a key role in the normal functioning of the brain and nervous system, and for the formation of blood.” If this is my problem, it answers a lot of questions I have with regards to my sanity.

My blood results came back within a week and showed a very low level of B12 in my system. This is not good and requires urgent attention. Obviously you cannot just take a B12 pill as you would fail to absorb it. If you could absorb B12 you couldn’t be in this situation. You have to have injections for the rest of your life. On the plus side, I do now know there is a problem and it is something that can be dealt with. I’m kind of pinning all my hopes on these injections, but that is what us Crohnies do. We pin our hopes on medicine and IBD experts to help us through some rough times.

I’ve not started the course of treatment yet as I’m waiting for my GP to sort them out. It is not done as an out-patient at the hospital; you are referred back to your GP who will monitor you.
So hopefully the injections will sort me out. I miss my memory, I think?!

Keep well

Ben x