Me & My Crohns

Sounds like a nice thing to most people. A holiday is always nice. A break really helps. My latest holiday, though not quite as extreme as last year’s trip to Dubai, Cape Town and Mauritius but an 8 hour drive to Scotland did get me worrying. I’m generally pretty good in the car; I think this is due to being cupped by my lovely seats and my bowel being ever so slightly crushed. This “crushing” stops the movement through the system. 8 hours of driving though is more than I have ever done in 1 go so I did have a bit of a worry.

Luckily we only had to stop 3 times on the road to our cottage in the Highlands. Each time we stopped and I stood up, stretched and started walking towards the service station I had a bit of a rush. The crushed bowel had opened up and stretched. Movement had resumed. But a quick break relieved this and to be honest, I have had much worse trips and I think my bladder was the most annoying!

Another fear of mine was the layout of the cottage. I had only seen pictures of the outside and some of the lounge and kitchen. I had no idea of toilet standards or where they may be positioned in the cottage. The cottage was selected because of how secluded it was, but then this had me worrying. Maybe there isn’t any running water, or the toilet is outside. These were all silly thoughts and thankfully the cottage was perfect and had a good stock of toilet rolls (although they were the cheap ones).

When I went to Devon a couple of years ago, I think i had a reaction to the water. Since then I have avoided drinking local water just in case the change caused problems. However, at home we drink “highlands” spring water, so I assumed the drinking water in the Highlands would be ok; and you know what? It was. Lovely and chilled straight from the tap. I had a few emergency runs to the loo, but we were always at the cottage so there was no real problem and a couple of Imodium later I was fine.

We rode the “Harry Potter” train or the Jacobite as it is better known. This was a 2 hour journey which included rising over the Glenfinnan Viaduct which is featured in the Harry Potter films. I was excited by this and for the first time in a while I wasn’t concerned about the loo. I should have been, but I wasn’t. Being a steam train, all the carriages seemed to have steam too. So there was a lot of steam filling the carriages, this included the toilets. When I went in for a wee i nearly drowned! The walls were dripping, the loo roll was soggy and the toilet was a mess. For some reason it hadn’t been flushed, or it was over flowing. Somehow, I don’t know how but somehow, I avoided all emergencies and its a bloody good job too.                                                                    

So the holiday was a success and has helped relax my mind about future holidays. The holiday was also a nice break before I start my new job.

As I upload this to my blog, I am writing about my new job. This was a bit more eventful!

So for now; take care

Ben x

I’m going to get into a lot of trouble for saying that. I seem to say “somebody is trying to kill me” quite often, but I’m generally referring to whoever cooked a particular meal. At the weekend I spent the day with the in-laws whilst my wife met up with her friends for a wedding dress shopping trip. My mother in-law cooked sausage, chips and peas. The sausages were specially selected from a proper butcher, none of this supermarket rubbish, the chips were homemade and the peas were probably out of a tin. It was delicious. I try really hard to be normal, and eat as if I were not ill, but peas, well green veg in general, causes quite a few problems for me. I have to be having a good Crohn’s day to be able to stomach them, else they causes pains and toilet dramas. Personally I thought I was well enough to eat these “dangerous” foods, after all my operation was a long time ago now (2 months) and I haven’t got any strictures any. In my head I could eat whatever I wanted, so when the food was placed in front of me, that gorgeous meal containing bulbous sausages and crispy chips with green, sloppy goodness, I ate it as fast as I could and enjoyed every second of it. I enjoyed it right up until my bowel started to get sore, tummy ache set in and I was having “toilet issues”. Maybe I’m still pretty fragile after the op after all.

On the plus side though, I have started cycling to work again. This is the first bit of exercise I have done since February and it hurt. I am obviously taking it easy and trying not to push myself too hard, while at the same time I have a need to push myself enough so I don’t become lazy. It was glorious to be back cycling to work (shame about the work bit though). I could here “cha ching”, the sound of saving money as well as feeling the blood flow around my body. The more exercise I do, then the stronger my body will become ready for the next time I have a flare up. During healthy periods, I try to gain a bit of weight and strengthen my muscles. The fitter I am when I’m “healthy” the easier it is to cope with the rough weeks and months when I’m not so healthy.

You will be pleased to know I am feeling pretty good in general. I have some rough moments each day, but since the operation my overall well being has improved. My large scar (well my tiny 2 inches of scar) is still a little sore to touch and does occasionally leak, causing a scab to form over the top. I also still get a sore ache in my gut, which I am finding difficult to work out if it is Crohn’s related or operation related. My surgeon has happily released me from his clinic, saying that I am recovering really well and have made a brilliant recovery. I am now waiting to hear from my Crohn’s consultant to find out what medication I will be on. There is a rumour of being started back on Azathiprine, which I am not too happy about. I have been on this drug in the past and at a small dosage level it didn’t work for me and at a higher dosage level I become very sick, vomiting far too often. The last thing I want to do now, is go through another rough couple of years and end up back at the surgeon’s table being operated on.

If you are due a laparoscopic operation, then I recommend watching my surgical consultant’s videos on YouTube. They have been discussed in the local media recently and seem to be a break through in consultant/patient understanding. Follow the links below:

Video 1

Video 2

I just want to clear up that my mother in-law probably isn’t really trying to kill me, nor is anyone else (I hope) but certain foods really do cause me trouble. I’m not the only one of us Crohnies to report intolerance to certain foods so it may be worth monitoring what you eat and the symptoms you get shortly after. It’s not every time I eat them, sometimes I can tolerate these foods, but at certain times they cripple me. Green veg and milk seem to be the biggest offenders for me. I often joke that people are trying to “off” me when they serve me a plate full of veg. I don’t make a big fuss about my dietary problems as it can make people feel awkward. So if I feel brave I eat them, if not I leave them.  Everyone is a winner. Plus it’s nice to have an excuse to eat the “danger” foods, they are the best.

Well here I am again. I find myself sitting on a hospital bed with a cannula in my arm and my wife by my side. I’m waiting to have an x-ray of my abdomen and random chest scan. I have been seen by a few doctors and quizzed by the nursing staff. I’ve been cupped, prodded, interrogated, pricked and held captive. I’m in awe at the amount of paper work these nurses need to fill in; surely their time is better spent fixing us broken people! Oh well, mustn’t complain, at least they are trying to help me out and trying to avoid mistakes.

I had better go back a couple of days and explain why I’m here, back in hospital. At the weekend I developed a strange pain which I had not felt before and so did cause me some concern. Fortunately it passed and seemed to disappear. Then, just before we left to walk into town on the Sunday morning I started to get the same pain again. The pain feels like it’s starting in my right testicle and shoots right up into my bowel (about where an appendix should be). It cripples me for a few seconds then fades. If I stand perfectly still I can keep the pain from being prolonged. Extra movement causes extra pain. It’s a bit like somebody has grabbed my crown jewels and twisted (sorry girls you may not be able to picture that pain). Then the pain fires upward toward where my operation took place. After around seconds, the pain goes. It passes as if nothing ever happened. At the time I thought I was in the clear and could continue with my shopping trip. The walk there was pain free, just with a small ache in my groin. My fitness is getting back to a normal level and I find myself being able to walk a good couple of miles with minimum discomfort. Once in town I had another few painful episodes. It was making me walk funny as I was trying to softly lower my right foot to avoid provoking the pain. It looked like I had a walking disability. I had to take a good rest on a bench to try and recover.

The pain would cycle and lull me into a false sense of security. I would think that maybe the twinge had rectified itself but I would soon be shocked into a painful submission, where I would need to freeze perfectly still.

Luckily we managed to get home and for the rest of the day my lovely wife did everything whilst I sat at a funny angle (so as not to provoke a painful reaction) and watched TV and played Xbox. You may be reading this and thinking, “Ooh, what fun”, NO! Not fun at all. Painful. Extremely painful.

I managed to sleep pretty well, although I could still feel an ache in my groin. As far as I was concerned I thought it was a trapped nerve or damaged muscle from the Op, but it needed to be checked just in case it was something related to my very, very important Man area.

A quick visit to the GP helped clear my mind of anything wrong with my Gem’s (I’m trying not to say testicles too much as it brings an embarrassed flush to my cheeks!) The GP gave me a good check over, with a poor student Doctor watching everything and being questioned by the qualified Doc. “So, what do you think it is? Think about his symptoms and what he has described, what would you do?” Poor student had no idea, but luckily the Doc did. To be safe, she booked me in at the hospital for some in depth checks just to make sure no major complications were taking place due to the surgery.

We arrived at the hospital at 11am and returned home at 8.30pm. I was no real better off, in fact I was worse. I now have a massive bruise on my tummy where they injected me with the blood thinning drug, just in case I was staying overnight and a massive bruise which takes up the whole of the back of my hand from where the nurse removed the cannula (It also bubbled up to the size of a ping pong ball due to a small leak and swelling).

Many nurses, doctors and surgeons came to visit me. They agreed that they all believed I was fine and that there is nothing that can be done. The head surgeon basically told me that he was pretty sure, PRETTY SURE, that I would be fine. He then said, “let us see if he is alright after food”. The nurses then took this to mean that I had to stay and eat tea. There had been nothing wrong with eating or passing bowel movements. Why do I need to eat? Anyway, I forced a sandwich down and waited some more, until eventually I was sent home.

Luckily the pain died down over the following 2 days, until now, 4 days later when I can’t even feel an ache in my groin. I believe it was a trapped nerve; a trapped nerve that managed to un-trap itself. My body seems to be good at fixing itself (from silly things, not Crohn’s!) and I only went to the hospital for reassurance due to my recent Op.

One good thing that came out of this though is I now know why my thigh was shaved during the Operation. Apparently I had to be earthed as they used a clever electrical current cutting tool to break through my skin.

I am now fit enough (I hope and think) to return to work. I have made a massive improvement over the past 4 weeks. 4 weeks, I cant believe it. I have had major surgery and yet I am nearly back to a normal life, as normal as can be.I still cant carry heavy objects or jump around. I am leaving cycling for another couple fo weeks just make sure I am match fit. It is a bit of a shame that I have to go back to work now though, the weather is bloody lovely.

I will be seeing my surgical consultant in 3 weeks to make sure he is happy with my recovery. I should be seeing my Crohn’s consultant pretty soon to discuss how my Crohn’s disease will be managed from here on.

 The only way is up. Come on, I can get there. Join me to a full Crohn’s free life.

Much Love

Ben