Me & My Crohns

I went into work on the Monday but was experiencing a few annoying pains. I took some pain relief to try and make it all a bit more bearable. A mixture of pains and pain killers made for a rather dazed day. I couldn’t focus on what I was doing. I was no real use to anyone but at least I was there. Nobody knew the extent of how I was feeling; so as far as they knew I was having an ordinary day.

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

I thought it was just a sign of getting older; just something that happens later on in someone’s life. Then I remembered that I’m still in my 20’s. My wife always has to remind me about things. “Remember you were going to do that”, “your mum has already told you this”; “do I have to repeat myself again?” This has become an all too common occurrence. My memory is not what it once was ~ I think.

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

A little while ago I wrote a blog about how people comment on how well you look, even when you are feeling really poorly. The other day someone uttered those usually annoying words in my direction; “you look well”, however, this time it was true. They were uttered by another sufferer who knows not to use those words lightly.

I’ve put weight on, pretty much lost the bags from under my eyes and finally got some colour back to my face. I am feeling really good. The bathroom department is almost normal, or at least what I think normal should be. It’s a scary thought being normal. It’s left me with a sense of freedom I’ve not felt for years. As you may have noticed, my blog is not as regular as it used to be. I seemed to have reached point where I can push the Crohn’s Disease to the back of my mind.

My consultant thought it would be useful to have a good look inside and check everything was ok. My bloods were not showing any activity but these cannot always be relied on. A visual of my bowel would give hard evidence of all being well.

I’ve had a colonoscopy a few times in the past. This is where they insert a long camera, about the same thickness as your thumb, into
the rectum. It scopes further round than an endoscopy so it is recommended to have medication to help you relax. Air is blown in through the end of the camera, to expand the bowel and give a clear view.  This can cause a little discomfort and is occasionally painful. When this happens, you will be thankful for the drugs and how they help you forget where you are and what is happening. You remain conscious during the procedure and can view the monitor and see all that is happening. I find this very interesting and love asking questions. I don’t shut up and by the end of the procedure I know exactly what has been seen through the scope, the surgeon’s life story and what the nurse has been up to lately! The biggest problem with this is after the procedure, the drugs have made you forget most of what happened.

During the procedure the surgeon didn’t notice anything of significance. He said it all looked good and had also seen some of the area
that was operated on last year. It was odd seeing the staples that remain in there. Using special pincers on the end of the camera, some biopsies were taken from certain areas of the bowel. These areas were picked either because they are known flare up points in me or because they were a slightly different shade of red.  He told me there was no sign of the Disease but biopsies are taken as standard procedure, just to be sure.

I guess while I’m talking about endoscopes, I really should mention the preparation. This, for me, is the most unpleasant point. I’m so
used to doctors being behind me with rubber gloves on, that I don’t really mind the actually procedure (plus you get some really nice drugs, as I’ve already mentioned!). The preparation consists of 2 sachets of liquid. These are to be taken the evening before and the morning of your procedure. It’s a laxative that ensures the bowel is completely clear. I’m not sure of how it actually works, but it seems to take all the liquid your body and direct it round the digestive system and out the rear. It is very strong stuff and works pretty quickly. You are advised to be within a short run of a toilet. I would ensure you have some entertainment in the bathroom as you’ll be in there a lot.

A couple of weeks after the procedure I was invited back to my consultant. First he asked how I was feeling. To this I responded with the
truth. I was actually feeling really good. He said the visuals on my scope were good and my bloods are all looking stable, however, the biopsies showed some inflammation. So my Crohn’s is still active; I’m not in remission. This wasn’t the news I was expecting. My Mercaptopurine was reduced down to reflect the fact that I’m feeling well. I had hoped we could stop it completely. I must carry on with it though as the Disease is still present. I really thought after seeing a lovely bowel on the scope and some normality in the bowel movements department that I was in some kind of remission. Once again I have been thwarted by my nemesis: Mr Crohn’s.

On the plus side, I don’t need to return to the IBD clinic for 12 weeks. This is the longest amount of time between consultations in
years. So my consultant must be pretty confident that I’m in control.

My next battle will be my mind. My head has been very cloudy recently, with some major memory problems and concentration problems. I had a blood test to see if it is because of low B12 levels. The Op I had last year chopped out a small bit that dealt with absorbing B12. I get my results tomorrow…….. I kind of hope it is B12 as then at least there is a way of dealing with it and hopefully my mind will come back to me. I miss him

Anyway, that is for another blog.

If you’re having a scope, it really is nothing to get yourself worked up about. The doctors and nurses do it all day, every day, so you’ve got nothing to be shy about. Just chat to the nurse and hold his or her hand. It’s a real comfort.

Keep well

Ben x